It’s a sunny Saturday in September. The perfect opportunity to relax in the garden and reflect on my experience at the British Cycling talent ID weekend I attended last month.
We all know I am athletics obsessed. You only have to check who I follow on Twitter to learn I am an avid fan. Whilst injury has prevented me from competing in over 3 years, my commitment to the sport still remains.
Thus when British Cycling advertised their search for a female visually impaired stoker for the Tokyo Paralympics back in June, my immediate response was dismissive. For years people have been encouraging me to try cycling and for years I have whistled the same tune, ‘no I love athletics.’
Although initially reluctant to put myself forward, the amount of messages I received from different people urging me to go for it started to get my cogs whirling. I had nothing to lose, it didn’t mean I had to quit athletics, wouldn’t it be worth finally finding out if it was a sport that I could excel at. After all I have seen multiple athletes transition from athletics to cycling. There must be something good about it.
With gyms closed and no access to a bike it wasn’t as if I could prepare myself for the weekend as I would have liked. In truth during lockdown my motivation and ability to train was proving a challenge. Nevertheless, the prospect of the weekend marginally improved my drive to exercise.
Prior to the weekend I was informed there would be 3 bike tests. 3 x 6 second sprints, a 1 minute effort and a 3 minute effort. Being a sprinter I was looking forward to the 6 second sprints and the others not so much. Based on the results from the tests on the Sunday we would be split into 3 groups that would indicate if we had Tokyo potential, Paris potential or currently lacked potential. The thought of being placed in the final group somewhat terrified me. Despite having nothing to lose that result would be a slap in the face.
The talent ID weekend was being held in Manchester. Thankfully I didn’t need to arrive until the afternoon meaning it wasn’t a too early start. To give you some context, I have never been to a velodrome, never worn cycling shoes or ridden a turbo bike. This caused some apprehension. My mum travelled up with me and was soon ushered away to the stands leaving me alone with the British Cycling staff and the other hopefuls. Being left without direct support also unnerved me.
Various British Cycling people came over to chat and help me set up. However, as soon as they came over it wasn’t long before they disappeared again. I didn’t fully understand how the gears worked on the bike, the person helping me didn’t fully understand I couldn’t see when they told me to push the black leaver. I asked if they could sort the gears for me, I assumed they needed to be set on a specific setting anyway. I was left to warm up and was told after 5 minutes had past to pick up the speed. Not being able to see the timer of course I had no idea when it was time to change up and so just turned over gently.
For the actual test part we were all allocated an individual. For the 6 second sprints we had to go from a static start. I had no clue what position my pedals should be in to get the best start. On my first sprint the bike moved everywhere to my surprise. That kind of thing never happens with the bikes in the gym. My second sprint felt better and the power output reflected this. My final sprint was better again and my competitiveness that had been lying dormant for so long began to trigger. I vocalised that I could do so much more. This led them to letting me have a fourth attempt where I added another 40 odd to my power output. I could see my potential, I hoped they could too.
The person helping me with my bike clicked the gears for me before the 1 minute effort began. Fuelled up from the sprints I was ready to go all out. I was then stunned when I pushed down on the pedals to discover I could hardly turnover. The resistance was stupidly tough. I assumed everyone was on the same resistance and pushed on as best I could. The desire to stop was overwhelming. However, I knew not finishing the effort would be embarrassing. So I kept repeating to myself ‘don’t’ stop’. When I got off the bike my left knee was throbbing and I had some soreness near my right knee that when I got home I found was swollen. The effort had flared up an old injury and caused another with the 3 minute effort still to go.
I made it clear for the 3 minute attempt that I would not be having the resistance that high. Feelings of frustration flooded me. My legs were on fire. The 3 minute effort actually turned out to be a 3 minute 30 second effort. They take your best 3 minutes from the set time. I managed it relatively well but all things considered knew it wouldn’t be amazing. After the tests had been completed I learnt that the gears could have been set to whatever you wished. This infuriated me even more. As a totally blind person who had never used a turbo bike before it wasn’t explained to me enough how to set the gears and know what they were set on. It wasn’t made apparent before the tests that we could choose the setting. I thought for it to be fair everyone would have to be on the same setting.
I returned home that night and wasn’t enthusiastic about returning in the morning. I knew my ability hadn’t been showcased. My visual impairment hadn’t been understood. All of the females attending the talent ID weekend had a visual impairment but having no useful vision left me in a minority. In athletics there are 3 classifications for the visually impaired, in cycling the visually impaired are altogether.
It was an early start on Sunday to get back to Manchester. The only real reason I was returning was to cycle on the velodrome to say I have done it. It was becoming apparent that I was unlikely to continue with cycling in the future. All of the hopefuls were grouped together to find out which group they would be in. it was like waiting for the X Factor results. They decided to read out group A and B together first then we would be split again. Names started to be read out and I was relieved to hear mine. They had thankfully acknowledged I have some kind of potential.
For a moment I dared to believe that I would be put in group A. it quickly became obvious I hadn’t. in fact my name was bottom of the group B list. I don’t know if names were in any particular order yet it appeared I had just scraped through. I then had to sit and wait for hours before I was given 10 minutes on the velodrome with a pilot. I’m not going to lie I did enjoy my brief time on the back of the tandem. However, the vibes I was getting from the British Cycling staff told me blatantly that I was not on their radar for the future.
The following week I received a call from British Cycling confirming that they were not interested in me at this time. It was no surprise. I didn’t hesitate in providing my feedback when prompted. They did comment that my 6 second sprints ranked me quite highly. Initially following the weekend I was of the firm belief that me and cycling were done. Having time to think about it all the experience was extremely beneficial. It has reignited my competitive spirit. My heart still lies with athletics. Yet I am struggling to accept that British Cycling didn’t get to witness my capability. I want to prove I have potential, prove I can, prove them wrong.
18 visually impaired females attended the talent ID weekend. British Cycling have chosen 3 to progress to the next stage. It was brilliant to see so many visually impaired females participating in sport.
Showing posts with label Blind. Show all posts
Showing posts with label Blind. Show all posts
Saturday, 12 September 2020
Wednesday, 20 May 2020
I See
Blog 25 – 2.6 Challenge – 26 blog posts over 26 days…
Even though I can’t see, I can see. I can see the past so vividly. It astonishes me how clearly I can recollect the past. I don’t just recall the basics like colours, I know details. For example, I can remember certain images and patterns on my clothes. I can picture characters from cartoons, such as Gus from Recess and Tommy from the Rugrats. I can see the shape of Gus’s glasses and how his trousers are too short thus exposing his socks. My mind’s eye can view Tommy’s bald head, the blue of his t-shirt and how he stands with bowed legs. As a child I never consciously stored these images, yet they are there for me to access on demand.
In the present I can see. I imagine my surroundings constantly. When I go for a walk and a car passes me by I give it a make and a colour. When I use a controlled crossing I picture the capital letters of ‘wait’ highlight itself after I have pressed the button. At home in my kitchen I envisage my red appliances; kettle, microwave and toaster. I still look at myself in the mirror. I visualise my reflection, how my hair falls, how my facial features look.
In my dreams I can see. Rarely am I blind and if I am I can still watch the dream play out in pictures. Every night my brain constructs lavish landscapes and intricate scenes. I have the ability to freely access my dream world. I wander around oblivious to my visual impairment.
In reality I cannot see. Wave your hand in front of my face and I will just feel the breeze it creates. Exit a room without a word and I will believe you are still sharing my space. Many people assume that the blind live in darkness. I can confirm that we live in pictures.
I am taking part in the 2.6 Challenge to help save our UK charities. If you enjoyed my blog post or are feeling generous please consider donating as little as £1 to support my chosen charities: The Norrie Disease Foundation, Guide Dogs for the Blind, Look UK, RNIB and Girl Guiding UK. You can find my fundraising page by clicking here
Thank you and stay safe x
Even though I can’t see, I can see. I can see the past so vividly. It astonishes me how clearly I can recollect the past. I don’t just recall the basics like colours, I know details. For example, I can remember certain images and patterns on my clothes. I can picture characters from cartoons, such as Gus from Recess and Tommy from the Rugrats. I can see the shape of Gus’s glasses and how his trousers are too short thus exposing his socks. My mind’s eye can view Tommy’s bald head, the blue of his t-shirt and how he stands with bowed legs. As a child I never consciously stored these images, yet they are there for me to access on demand.
In the present I can see. I imagine my surroundings constantly. When I go for a walk and a car passes me by I give it a make and a colour. When I use a controlled crossing I picture the capital letters of ‘wait’ highlight itself after I have pressed the button. At home in my kitchen I envisage my red appliances; kettle, microwave and toaster. I still look at myself in the mirror. I visualise my reflection, how my hair falls, how my facial features look.
In my dreams I can see. Rarely am I blind and if I am I can still watch the dream play out in pictures. Every night my brain constructs lavish landscapes and intricate scenes. I have the ability to freely access my dream world. I wander around oblivious to my visual impairment.
In reality I cannot see. Wave your hand in front of my face and I will just feel the breeze it creates. Exit a room without a word and I will believe you are still sharing my space. Many people assume that the blind live in darkness. I can confirm that we live in pictures.
I am taking part in the 2.6 Challenge to help save our UK charities. If you enjoyed my blog post or are feeling generous please consider donating as little as £1 to support my chosen charities: The Norrie Disease Foundation, Guide Dogs for the Blind, Look UK, RNIB and Girl Guiding UK. You can find my fundraising page by clicking here
Thank you and stay safe x
Monday, 18 May 2020
Sharing the Struggles
Blog 23 – 2.6 Challenge – 26 blog posts over 26 days…
I have been visually impaired for as long as I can remember. It has been 13 years since I had useful vision. Useful vision being the ability to see shapes, colours and print with the aid of a CCTV magnifier. It has been even longer since I could read print unaided, play sports such as netball and tennis, function like a fully sighted person. Today marks the beginning of mental health week. Generally I don’t mind being blind. I have adapted and lead a fulfilling life. However, losing my vision throughout my childhood was hard. I didn’t just lose my sight, I lost my confidence, friendships and identity. If I still had good partial vision I wouldn’t be the same person I am today. My sight loss has caused me to become a version of myself that I never planned on being.
Do I miss having sight? In all honesty I do every single day. There is always something I want a quick glimpse of from knowing what a tinned can is in the cupboard to watching the boys playing tug. I wish I knew what my partner looked like, I wish I could see all of those silly memes and gifs. I wish every second of everyday wasn’t so difficult. The level of concentration needed to pour a cup of tea or the extra effort needed to find something on a table can be draining. People don’t see the little struggles because I have learnt to get on with life, present myself as capable and confident. I believe human nature forces us to hide our weaknesses. Yet we shouldn’t be afraid to share our imperfections. Whilst I portray positivity within my blog posts, I hope people recognise and appreciate that I don’t shy away from writing about the difficulties of sight loss too.
For years I convinced myself that being blind wasn’t forever. There would be a cure. I would regain vision again. I lived in denial. I’m not sure exactly when it happened, when I started to accept my blindness. It was probably a combination of factors from taking athletics seriously where my sight loss was irrelevant to mixing with other visually impaired people. Other people who had experienced sight loss, visually impaired people that acted as sub-conscious role models to me who demonstrated that being blind doesn’t stop you from living.
I accept that I can’t see. I accept that the simplest of tasks can prove quite the challenge. Being blind causes me stress and anxiety on a daily basis. I can’t wave a magic wand to fix my vision. What I can do is not let my lack of vision control me. I control it. I take on the testing situations and applaud my achievements. Sometimes I fail and consider defeat. Then I take a deep breath and vow to try again.
If you are struggling with your mental health please don’t feel embarrassed or scared to seek support.
I am taking part in the 2.6 Challenge to help save our UK charities. If you enjoyed my blog post or are feeling generous please consider donating as little as £1 to support my chosen charities: The Norrie Disease Foundation, Guide Dogs for the Blind, Look UK, RNIB and Girl Guiding UK. You can find my fundraising page by clicking here
Thank you and stay safe x
I have been visually impaired for as long as I can remember. It has been 13 years since I had useful vision. Useful vision being the ability to see shapes, colours and print with the aid of a CCTV magnifier. It has been even longer since I could read print unaided, play sports such as netball and tennis, function like a fully sighted person. Today marks the beginning of mental health week. Generally I don’t mind being blind. I have adapted and lead a fulfilling life. However, losing my vision throughout my childhood was hard. I didn’t just lose my sight, I lost my confidence, friendships and identity. If I still had good partial vision I wouldn’t be the same person I am today. My sight loss has caused me to become a version of myself that I never planned on being.
Do I miss having sight? In all honesty I do every single day. There is always something I want a quick glimpse of from knowing what a tinned can is in the cupboard to watching the boys playing tug. I wish I knew what my partner looked like, I wish I could see all of those silly memes and gifs. I wish every second of everyday wasn’t so difficult. The level of concentration needed to pour a cup of tea or the extra effort needed to find something on a table can be draining. People don’t see the little struggles because I have learnt to get on with life, present myself as capable and confident. I believe human nature forces us to hide our weaknesses. Yet we shouldn’t be afraid to share our imperfections. Whilst I portray positivity within my blog posts, I hope people recognise and appreciate that I don’t shy away from writing about the difficulties of sight loss too.
For years I convinced myself that being blind wasn’t forever. There would be a cure. I would regain vision again. I lived in denial. I’m not sure exactly when it happened, when I started to accept my blindness. It was probably a combination of factors from taking athletics seriously where my sight loss was irrelevant to mixing with other visually impaired people. Other people who had experienced sight loss, visually impaired people that acted as sub-conscious role models to me who demonstrated that being blind doesn’t stop you from living.
I accept that I can’t see. I accept that the simplest of tasks can prove quite the challenge. Being blind causes me stress and anxiety on a daily basis. I can’t wave a magic wand to fix my vision. What I can do is not let my lack of vision control me. I control it. I take on the testing situations and applaud my achievements. Sometimes I fail and consider defeat. Then I take a deep breath and vow to try again.
If you are struggling with your mental health please don’t feel embarrassed or scared to seek support.
I am taking part in the 2.6 Challenge to help save our UK charities. If you enjoyed my blog post or are feeling generous please consider donating as little as £1 to support my chosen charities: The Norrie Disease Foundation, Guide Dogs for the Blind, Look UK, RNIB and Girl Guiding UK. You can find my fundraising page by clicking here
Thank you and stay safe x
Saturday, 16 May 2020
Accessible Fitness
Blog 21 – 2.6 Challenge – 26 blog posts over 26 days…
Before the pandemic it was a known fact that visually impaired people regularly experienced social isolation. Therefore I find it somewhat surprising that it has taken the entire nation to be socially isolated to prompt accessible homebased activities. Perhaps it existed to a degree and it wasn’t well advertised or utilised. I hope post pandemic charities and businesses will continue the online work they have started.
Staying fit and healthy is something that I feel strongly about. I think everyone should have the opportunity to feel the adrenaline rush that exercise gives you. Since the lockdown I have come across two fantastic resources that I encourage visually impaired people to take advantage of.
First is the British Blind Sport stay in work out face book group. To date the group has 360 members. This immediately tells me that not enough people know about the group. It is a place to talk about sport and share experiences. There are also a host of accessible work out videos from boxercise to strength and tone. Currently each Wednesday they do a live work out that people can access via Zoom. Just search British Blind Sport stay in work out on Face Book and you should find the group.
The second resource is the Look UK You Tube channel. Check out their keep fit videos from yoga to circuits. They also have some other interesting content to browse once you have worked up a sweat. If you are keen on poetry then you might want to get involved with their poetry challenge. Exercising the mind is important too.
I am taking part in the 2.6 Challenge to help save our UK charities. If you enjoyed my blog post or are feeling generous please consider donating as little as £1 to support my chosen charities: The Norrie Disease Foundation, Guide Dogs for the Blind, Look UK, RNIB and Girl Guiding UK. You can find my fundraising page by clicking here
Thank you and stay safe x
Before the pandemic it was a known fact that visually impaired people regularly experienced social isolation. Therefore I find it somewhat surprising that it has taken the entire nation to be socially isolated to prompt accessible homebased activities. Perhaps it existed to a degree and it wasn’t well advertised or utilised. I hope post pandemic charities and businesses will continue the online work they have started.
Staying fit and healthy is something that I feel strongly about. I think everyone should have the opportunity to feel the adrenaline rush that exercise gives you. Since the lockdown I have come across two fantastic resources that I encourage visually impaired people to take advantage of.
First is the British Blind Sport stay in work out face book group. To date the group has 360 members. This immediately tells me that not enough people know about the group. It is a place to talk about sport and share experiences. There are also a host of accessible work out videos from boxercise to strength and tone. Currently each Wednesday they do a live work out that people can access via Zoom. Just search British Blind Sport stay in work out on Face Book and you should find the group.
The second resource is the Look UK You Tube channel. Check out their keep fit videos from yoga to circuits. They also have some other interesting content to browse once you have worked up a sweat. If you are keen on poetry then you might want to get involved with their poetry challenge. Exercising the mind is important too.
I am taking part in the 2.6 Challenge to help save our UK charities. If you enjoyed my blog post or are feeling generous please consider donating as little as £1 to support my chosen charities: The Norrie Disease Foundation, Guide Dogs for the Blind, Look UK, RNIB and Girl Guiding UK. You can find my fundraising page by clicking here
Thank you and stay safe x
Thursday, 14 May 2020
Working From Home
Blog 19 – 2.6 Challenge – 26 blog posts over 26 days…
I’m writing this post late in the day, my brain is somewhat fried. However, I have committed to writing these 26 blog posts over 26 days and I am not one who likes to quit easily. I am running on fumes after working yesterday and today. I’m also working tomorrow which is super rare for me to work 3 days in a row. Anyone who manages to work fulltime I commend you. I enjoy working but it always mentally drains me. The work I do is intense, both with Choice Support and Voiceability. Yet I know the work I do as an Expert by Experience is highly important. It literally impacts on vulnerable people’s lives. I have the chance to help make a positive difference.
Since the pandemic lots of people are now working from home. As a visually impaired person I much prefer it. I no longer have to stress about getting to work on time. I don’t have to worry about bus or train delays or panic about traffic jams. I get to work in a familiar environment rather than visiting varying venues that I might get used to but then always be in a different room. I don’t have to depend on people to help me find the toilet or a suitable spending area for my Guide Dog. I have the freedom to move around at break and lunchtimes. I have access to all of my assistive technology. I am more independent, more in control.
There are some negatives around homeworking like dodgy internet connections. I think it makes it harder to build a rapport with colleagues too as you are heavily focused on the job in hand as opposed to having small talk. Although we do chat informally for short periods. Conference calls amuse me as now everyone struggles to read the cues for a good time to talk and people end up interrupting each other. A colleague said yesterday that she is learning to recognise people by voice, I told her ‘welcome to my world’!
I am taking part in the 2.6 Challenge to help save our UK charities. If you enjoyed my blog post or are feeling generous please consider donating as little as £1 to support my chosen charities: The Norrie Disease Foundation, Guide Dogs for the Blind, Look UK, RNIB and Girl Guiding UK. You can find my fundraising page by clicking here
Thank you and stay safe x
I’m writing this post late in the day, my brain is somewhat fried. However, I have committed to writing these 26 blog posts over 26 days and I am not one who likes to quit easily. I am running on fumes after working yesterday and today. I’m also working tomorrow which is super rare for me to work 3 days in a row. Anyone who manages to work fulltime I commend you. I enjoy working but it always mentally drains me. The work I do is intense, both with Choice Support and Voiceability. Yet I know the work I do as an Expert by Experience is highly important. It literally impacts on vulnerable people’s lives. I have the chance to help make a positive difference.
Since the pandemic lots of people are now working from home. As a visually impaired person I much prefer it. I no longer have to stress about getting to work on time. I don’t have to worry about bus or train delays or panic about traffic jams. I get to work in a familiar environment rather than visiting varying venues that I might get used to but then always be in a different room. I don’t have to depend on people to help me find the toilet or a suitable spending area for my Guide Dog. I have the freedom to move around at break and lunchtimes. I have access to all of my assistive technology. I am more independent, more in control.
There are some negatives around homeworking like dodgy internet connections. I think it makes it harder to build a rapport with colleagues too as you are heavily focused on the job in hand as opposed to having small talk. Although we do chat informally for short periods. Conference calls amuse me as now everyone struggles to read the cues for a good time to talk and people end up interrupting each other. A colleague said yesterday that she is learning to recognise people by voice, I told her ‘welcome to my world’!
I am taking part in the 2.6 Challenge to help save our UK charities. If you enjoyed my blog post or are feeling generous please consider donating as little as £1 to support my chosen charities: The Norrie Disease Foundation, Guide Dogs for the Blind, Look UK, RNIB and Girl Guiding UK. You can find my fundraising page by clicking here
Thank you and stay safe x
Wednesday, 18 September 2019
Alpaca Adventures
It’s that time again where I reprimand myself for not blogging enough and promise myself I will find the hours to blog more in future. There’s so much I want to get down so I can look back and appreciate the memories in years to come.
A couple of months ago I turned thirty-one. The build up to turning thirty seemed to go on forever yet suddenly thirty is already history. I always wondered when I would feel like a grown-up and I think thirty-one is the age. I don’t know how to explain it, I feel I hold myself slightly differently now. I feel more mature and dare I say wise. Saying all of that this year for my birthday I spent it feeding baby alpacas, hardly the most adult thing to do in the world, but it was a fabulous experience.
The more birthdays you have, the harder it gets deciding what to do. Then when you are visually impaired certain activities are ruled out like escape rooms, laser quest, go carting and paintballing for their lack of accessibility. I would love to try them all if I could. Going out for meals and to the cinema is nice, but they don’t always feel special. Deciding to feed baby alpacas was very last minute and something I thought the other half would enjoy as he is a massive animal lover. I didn’t think of myself so much. It would just give me something a bit different to do on my birthday.
There has been a lot in the press in recent months about the interaction between humans and wild animals. Swimming with dolphins, riding elephants and stroking lions are becoming frowned upon, as we are becoming more aware of the cruelty behind the scenes or the impact it has on their natural state. I don’t know if feeding baby alpacas is deemed ethical. However, I went to a lovely alpaca farm where the animals seemed to be well taken care of.
I have to stress I keep writing baby alpacas as it is quite significant. I didn’t sign up to feed adult alpacas, I was going to feed baby alpacas. Before the experience started we had a little health and safety brief as we would be entering the alpaca enclosure. They explained how to approach, feed and respect them. I asked my boyfriend how big a new born alpaca was and he told me they were knee height. You can picture my surprise then when we entered the enclosure and one casually nudged me on the shoulder! Apparently baby alpacas grow up super-fast. They were definitely all at least five foot in height and before anyone panics, the mums were in the enclosure too.
I like to put myself in situations outside of my comfort zone even if it means I am scared silly. So yes after learning how big baby alpacas actually are, I spent quite a lot of time gasping and generally being a wimp. Nevertheless, I did put my big girl knickers on and gradually relaxed. The animals were friendly in nature and eagerly ate the food from your hand. Their fur was extremely soft to the touch, a texture so unique.
I can’t recall seeing an alpaca when I had useful vision. Having the opportunity to interact with them allowed me to create an image in my mind’s eye, one I never would have truly got if someone was simply describing. Whilst I wouldn’t recommend all animal experiences for ethical reasons, if you are visually impaired and you get the chance to get up close and personal with an animal, go for it, enjoy it and treasure it.
A couple of months ago I turned thirty-one. The build up to turning thirty seemed to go on forever yet suddenly thirty is already history. I always wondered when I would feel like a grown-up and I think thirty-one is the age. I don’t know how to explain it, I feel I hold myself slightly differently now. I feel more mature and dare I say wise. Saying all of that this year for my birthday I spent it feeding baby alpacas, hardly the most adult thing to do in the world, but it was a fabulous experience.
The more birthdays you have, the harder it gets deciding what to do. Then when you are visually impaired certain activities are ruled out like escape rooms, laser quest, go carting and paintballing for their lack of accessibility. I would love to try them all if I could. Going out for meals and to the cinema is nice, but they don’t always feel special. Deciding to feed baby alpacas was very last minute and something I thought the other half would enjoy as he is a massive animal lover. I didn’t think of myself so much. It would just give me something a bit different to do on my birthday.
There has been a lot in the press in recent months about the interaction between humans and wild animals. Swimming with dolphins, riding elephants and stroking lions are becoming frowned upon, as we are becoming more aware of the cruelty behind the scenes or the impact it has on their natural state. I don’t know if feeding baby alpacas is deemed ethical. However, I went to a lovely alpaca farm where the animals seemed to be well taken care of.
I have to stress I keep writing baby alpacas as it is quite significant. I didn’t sign up to feed adult alpacas, I was going to feed baby alpacas. Before the experience started we had a little health and safety brief as we would be entering the alpaca enclosure. They explained how to approach, feed and respect them. I asked my boyfriend how big a new born alpaca was and he told me they were knee height. You can picture my surprise then when we entered the enclosure and one casually nudged me on the shoulder! Apparently baby alpacas grow up super-fast. They were definitely all at least five foot in height and before anyone panics, the mums were in the enclosure too.
I like to put myself in situations outside of my comfort zone even if it means I am scared silly. So yes after learning how big baby alpacas actually are, I spent quite a lot of time gasping and generally being a wimp. Nevertheless, I did put my big girl knickers on and gradually relaxed. The animals were friendly in nature and eagerly ate the food from your hand. Their fur was extremely soft to the touch, a texture so unique.
I can’t recall seeing an alpaca when I had useful vision. Having the opportunity to interact with them allowed me to create an image in my mind’s eye, one I never would have truly got if someone was simply describing. Whilst I wouldn’t recommend all animal experiences for ethical reasons, if you are visually impaired and you get the chance to get up close and personal with an animal, go for it, enjoy it and treasure it.
Friday, 9 August 2019
Support Selina To Save Sound
Fundraising. It is such a challenging task. There are so many worthy causes out there and so many charities seeking donations. In an ideal world we would donate to every charity if we could. I always try and give a few pounds here and there. I like the feeling that it gives me. The feeling that I am making a difference all be it small. Giving to charities definitely feels easier than requesting donations. Yet this is what I am here to do because the cause is something so personal and possibly life changing for me and my family.
Norrie Disease. It has stolen my vision and is threatening to steal my hearing too. It has stolen my brother’s vision, given him profound learning difficulties and also threatens to steal his hearing as well. It has also affected two of my uncles. One unfortunately passed away before I was born. He was blind and had profound learning difficulties like my brother and an epileptic fit (another symptom of Norrie Disease) took his life in his early twenties. My other uncle had his sight stolen at birth and Norrie Disease has already stripped him of his hearing. In short Norrie Disease has wreaked havoc on my family.
The cruel fact of the matter is that there is no cure for Norrie Disease. However, there is a glimmer of hope if the Norrie Disease Foundation can raise £62500 by February 2020. Please read on to find out more and how you can help.
Imagine A World Without Sight. Now imagine it without sound too. This is the reality facing people like me with Norrie disease.
Norrie disease is an ultra-rare genetic condition causing blindness/severe visual impairment from birth and deafness which can start in early childhood. In addition to this some also have issues with cognitive development.
There is currently no cure for Norrie disease.
There are around 40 known cases of Norrie disease in the UK and 500 globally; however we expect there are more families affected by this condition currently undiagnosed. Research into Norrie disease is severely underfunded and the current research looking into treating the hearing loss finishes in September 2020. If this research is not continued then children and families with Norrie disease have no hope in finding a cure before they lose their hearing as well. The progressive hearing loss is one of the most devastating symptoms of Norrie disease and we desperately need to continue this research but we need your help to do so.
The NDF was created in 2017 to respond to an acute need – to provide a support network, accurate info for families and professionals, and now, new research into Norrie Disease. The NDF is run solely by volunteers.
The Norrie Disease Foundation’s Vision is
To find a cure for Norrie disease hearing loss and to ensure the community has the support they need to live the lives they deserve.
Blind children with Norrie will go deaf too unless we fund further research now! Please help!
Thanks to Sparks and GOSHCC we have a chance to change this if we can raise £62500 by February 2020 to move forwards with pioneering research into stopping the hearing loss. Research into Norrie disease has already made a difference but the only way we can get more answers and results is to get more research done. Please join us on our journey of finding a cure - every single step is important.
This research has the potential to completely change the lives of those living with the condition - being able to identify why the hearing loss occurs, and when and what treatment to either halt or prevent the hearing loss is of huge importance to the Norrie community. Sound is incredibly important to those with visual impairment, so developing an additional sensory loss in late childhood/early adulthood is particularly hard for the individual. It is anticipated that the findings from the successful project would be adaptable to other relatable deaf/blind research projects.
If we don't raise a minimum of £62500 by February 2020 we can't stop our blind community becoming deaf too - please help us change this. A few ways you can help are outlined below-
Jeans for Genes
It would mean the world if you could get your child’s school, workplace or community group to sign up and hold a Jeans for Genes day between Monday 16 and Friday 20 September 2019. I am happy to go into your child’s school (within Leicestershire) with Guide Dog Calvin if they do sign up. All funds raised will go towards the research project. Feel free to pass my email address: selinalitt@googlemail.com to any schools. You can send photos of your Jeans for Genes day to me and we will post them across our social media. It is REALLY important when signing up that you select the Norrie Disease Foundation otherwise we won’t receive the donations. You can sign up here.
Face Book
Why not hold a fundraiser on Face Book in aid of the Norrie Disease Foundation when your birthday comes around. It is so simple to set up. Face Book will suggest setting up a fundraiser a week before your birthday. I did one this year and was delighted to raise £200 for the NDF. A massive thanks to my friends and family. Just one little thing to note, the search box is a bit silly so make sure you type ‘The Norrie’ in the edit area, as typing ‘Norrie’ doesn’t bring up the NDF for some unknown reason!
Amazon Smile
The next time you shop on Amazon instead of going through the main site go through Amazon Smile and select the Norrie Disease Foundation as your chosen charity. Amazon will then donate a small percentage to the NDF.
Run or Ride
Why not take a look at the running and cycling events the NDF has secured charity places for on their website. If you already have a place in an event you can still raise funds for the NDF, just let them know and you will be supported all the way.
DIY
Alternatively, you could create your own fundraiser. Perhaps a quiz or curry night? Football or tennis tournament? Fun day or music concert? Whatever it might be get in touch with the NDF and they will be more than happy to provide flyers advertising your event.
Just Donate
Finally, if you are feeling generous and would like to just donate a few pounds then that would be amazing. I have set up a fundraising page exactly for that purpose. You can visit it here Support Selina To Save Sound.
The NDF is such a small community with a tall target to reach. Every donation will be so gratefully received.
THANK YOU
Norrie Disease. It has stolen my vision and is threatening to steal my hearing too. It has stolen my brother’s vision, given him profound learning difficulties and also threatens to steal his hearing as well. It has also affected two of my uncles. One unfortunately passed away before I was born. He was blind and had profound learning difficulties like my brother and an epileptic fit (another symptom of Norrie Disease) took his life in his early twenties. My other uncle had his sight stolen at birth and Norrie Disease has already stripped him of his hearing. In short Norrie Disease has wreaked havoc on my family.
The cruel fact of the matter is that there is no cure for Norrie Disease. However, there is a glimmer of hope if the Norrie Disease Foundation can raise £62500 by February 2020. Please read on to find out more and how you can help.
Imagine A World Without Sight. Now imagine it without sound too. This is the reality facing people like me with Norrie disease.
Norrie disease is an ultra-rare genetic condition causing blindness/severe visual impairment from birth and deafness which can start in early childhood. In addition to this some also have issues with cognitive development.
There is currently no cure for Norrie disease.
There are around 40 known cases of Norrie disease in the UK and 500 globally; however we expect there are more families affected by this condition currently undiagnosed. Research into Norrie disease is severely underfunded and the current research looking into treating the hearing loss finishes in September 2020. If this research is not continued then children and families with Norrie disease have no hope in finding a cure before they lose their hearing as well. The progressive hearing loss is one of the most devastating symptoms of Norrie disease and we desperately need to continue this research but we need your help to do so.
The NDF was created in 2017 to respond to an acute need – to provide a support network, accurate info for families and professionals, and now, new research into Norrie Disease. The NDF is run solely by volunteers.
The Norrie Disease Foundation’s Vision is
To find a cure for Norrie disease hearing loss and to ensure the community has the support they need to live the lives they deserve.
Blind children with Norrie will go deaf too unless we fund further research now! Please help!
Thanks to Sparks and GOSHCC we have a chance to change this if we can raise £62500 by February 2020 to move forwards with pioneering research into stopping the hearing loss. Research into Norrie disease has already made a difference but the only way we can get more answers and results is to get more research done. Please join us on our journey of finding a cure - every single step is important.
This research has the potential to completely change the lives of those living with the condition - being able to identify why the hearing loss occurs, and when and what treatment to either halt or prevent the hearing loss is of huge importance to the Norrie community. Sound is incredibly important to those with visual impairment, so developing an additional sensory loss in late childhood/early adulthood is particularly hard for the individual. It is anticipated that the findings from the successful project would be adaptable to other relatable deaf/blind research projects.
If we don't raise a minimum of £62500 by February 2020 we can't stop our blind community becoming deaf too - please help us change this. A few ways you can help are outlined below-
Jeans for Genes
It would mean the world if you could get your child’s school, workplace or community group to sign up and hold a Jeans for Genes day between Monday 16 and Friday 20 September 2019. I am happy to go into your child’s school (within Leicestershire) with Guide Dog Calvin if they do sign up. All funds raised will go towards the research project. Feel free to pass my email address: selinalitt@googlemail.com to any schools. You can send photos of your Jeans for Genes day to me and we will post them across our social media. It is REALLY important when signing up that you select the Norrie Disease Foundation otherwise we won’t receive the donations. You can sign up here.
Face Book
Why not hold a fundraiser on Face Book in aid of the Norrie Disease Foundation when your birthday comes around. It is so simple to set up. Face Book will suggest setting up a fundraiser a week before your birthday. I did one this year and was delighted to raise £200 for the NDF. A massive thanks to my friends and family. Just one little thing to note, the search box is a bit silly so make sure you type ‘The Norrie’ in the edit area, as typing ‘Norrie’ doesn’t bring up the NDF for some unknown reason!
Amazon Smile
The next time you shop on Amazon instead of going through the main site go through Amazon Smile and select the Norrie Disease Foundation as your chosen charity. Amazon will then donate a small percentage to the NDF.
Run or Ride
Why not take a look at the running and cycling events the NDF has secured charity places for on their website. If you already have a place in an event you can still raise funds for the NDF, just let them know and you will be supported all the way.
DIY
Alternatively, you could create your own fundraiser. Perhaps a quiz or curry night? Football or tennis tournament? Fun day or music concert? Whatever it might be get in touch with the NDF and they will be more than happy to provide flyers advertising your event.
Just Donate
Finally, if you are feeling generous and would like to just donate a few pounds then that would be amazing. I have set up a fundraising page exactly for that purpose. You can visit it here Support Selina To Save Sound.
The NDF is such a small community with a tall target to reach. Every donation will be so gratefully received.
THANK YOU
Thursday, 15 November 2018
Vice Magazine
Once again I scorn myself for not blogging more. I will be back with some new material soon. In the meantime, I am linking to a piece from Vice magazine who asked me to contribute to their article about how blind people experience sexual attraction. It was an interesting topic to explore and you can read the article by clicking here
Sunday, 17 June 2018
Amsterdam
When you think of Amsterdam, the first things that come to mind are sex and drugs. The legalisation of prostitution and cannabis makes the capital city a popular destination for those who have a freer outlook on life. For someone who religiously goes to bed at 9pm, doesn’t drink or smoke and certainly doesn’t condone prostitution it is a wonder why I was on board when my friends suggested a trip to the city in order to celebrate all of us turning thirty. Perhaps a surprise to some, but Amsterdam is a place that actually oozes culture and well worth a visit for those who prefer a more subdued existence.
Nine of us travelled to Amsterdam at the end of May and I was the only visually impaired member of the group. Whilst I am well-travelled, I have mainly holidayed in beach locations and didn’t anticipate the physical and mental exhaustion that comes with getting around a busy and unfamiliar environment. Bicycles, trams, cars and people surround you at every turn and although I was always being guided I felt we were constantly crossing roads and dodging moving objects. Then there are the stairs. I learnt that Amsterdam has a lot of very old tall buildings and our hotel was no exception. The staircases in these buildings are not only steep, but spiral and have uneven steps. The struggle was real.
The difficulty with travelling in such a large group is that not everyone wants to do the same activities. Personally, I was keen to squeeze in as much site-seeing as possible and felt I experienced everything I wanted to. Below you will find my account of all the tourist attractions I visited and how I found them as someone with a visual impairment.
Anne Frank House ` `
A note to anyone planning on visiting this attraction, at present it is only possible to do so by purchasing an online ticket in advance. Tickets go on sale two months in advance and sell-out super-fast. We missed out on these tickets and had to purchase introductory programme tickets that are a bit more expensive, which go on sale two weeks before. These also sell-out on the morning they are released. I was unable to purchase tickets with my Supernova screen reader despite the website appearing fairly accessible at a glance. Thankfully the boyfriend was on hand to purchase our tickets. There was no option to buy a discounted disabled ticket.
The pre-talk that was included with the introductory programme ticket was quite interesting and useful especially if you are not completely familiar with the Anne Frank story. After the talk we were able to explore the Anne Frank House and were given audio guides. These were pretty accessible as once you are in a room you just need to wave it around a bit until you hear a beep, which triggers the information to start playing. Obviously it is useful if you can see where the trigger points are, but I was able to activate the audio guide myself in some of the rooms.
It was towards closing time when we visited The House so it wasn’t too crowded although there were bottle necks at times as people navigated the tricky staircases. There weren’t too many objects you could touch, but just being inside the building gave a good feel for the living conditions.
Sex Museum and Red Light District
Ok so it is kind of impossible to go to Amsterdam and not be a tad curious about their openness to sex. The sex museum is fairly visual and so I strongly recommend that if you are visually impaired that you go with someone who isn’t embarrassed to describe some of the exhibits. There are a few interactive features of the museum, I will leave your over active imaginations to guess what they might be. It is a place to go for a bit of a laugh and whilst it claims to guide you through the history of sex, I can’t say that that appears to be its main focus.
I have to admit that I was totally disappointed by The Red Light District. I think I was expecting throngs of sex hungry men to be pressed up against the windows deciding on which woman they wished to purchase. Instead I didn’t even realise I was walking through the district, it could have been a regular street. What I mean to say is there was no atmosphere about the place for somewhere that is so iconic.
Canal Cruise
Amsterdam is famous for its many canals and their canal cruises are popular with tourists. You have to be prepared to do a little queuing even after you have bought your ticket, but they do try to continuously load the boats. Everyone is given an individual audio guide and then the captain also offers additional information. Maybe due to fatigue, but I found the tour somewhat dull. I suspect the city has some beautiful views, I just couldn’t appreciate them and the audio guide didn’t offer much in terms of detailed descriptions.
Van Gogh Museum
The artist is famous for cutting off his ear and his depiction of sunflowers. I have a vivid memory of one of his sunflower paintings as I recall my primary school having a copy on the wall. I also thought I remembered what he looked like, but was stunned to discover that he was ginger. This makes me question how accurate my visual memory is.
The attraction is another that requires you to purchase tickets online in advance, which I didn’t realise until one of my friend’s notified me on the morning we planned to visit. Luckily, I had a quick look at the website after breakfast and discovered that they offered disabled visitors a free companion ticket that could not be purchased online. They allow disabled visitors to just turn up, buy a ticket on the door (note they only accept card payments) and enter through an access entrance that saves queuing. So it all worked out perfectly.
However, I was disappointed to learn that despite paying eighteen euros to get in an audio guide was an additional fee of five euros. I am not entirely sure if they are free as standard for those with a visual impairment, but they did give me one for free when we explained I was blind. Since I was the only one with an audio guide, there was some waiting around for me whilst I listened to the information. The audio guide was not accessible and I required someone to punch in the necessary numbers on my behalf.
The museum is extremely large and set over several floors. Possibly because of this we didn’t come across the 3D replica of one of the sunflower paintings, which I hoped to feel.
Floating Flower Market
In my mind’s eye this appears as a real spectacle as I imagine thousands of flowers in vibrant colours floating on the canal water in lots of pots. In fact it is basically a market that happens to be by the canal. The online description promises that you can smell the sweet and musky aromas. I did sneeze, but failed to smell anything. It is a good place to pick up souvenirs and I did get to see some traditional Dutch clogs.
Ice Bar
This attraction is cool! On arrival you are given three tokens, one can be used in the main warm bar and two in the actual ice bar. The tokens entitle you to free drinks. Prior to entering the ice bar you are given a coat and glove. I brought my own hat and gloves for further insulation. It is a great sensory experience as you can of course feel the minus temperatures, the glasses you get your drinks in are made out of actual ice and there is a polar bear ice sculpture that you can touch. Yet again this is another place where you need to pre-book your tickets in advance online.
Horse and Carriage Ride
Some of the landmarks that we passed on this tour were the same as the canal cruise tour, nevertheless I felt it was a more exciting way to view the city. I fantasised that I had gone back in time as our horse who was called Patrick trotted through the cobbled streets. The tour guide allowed us to give Patrick a fuss at the end, which was a calming activity to conclude a jam-packed few days in Amsterdam.
Nine of us travelled to Amsterdam at the end of May and I was the only visually impaired member of the group. Whilst I am well-travelled, I have mainly holidayed in beach locations and didn’t anticipate the physical and mental exhaustion that comes with getting around a busy and unfamiliar environment. Bicycles, trams, cars and people surround you at every turn and although I was always being guided I felt we were constantly crossing roads and dodging moving objects. Then there are the stairs. I learnt that Amsterdam has a lot of very old tall buildings and our hotel was no exception. The staircases in these buildings are not only steep, but spiral and have uneven steps. The struggle was real.
The difficulty with travelling in such a large group is that not everyone wants to do the same activities. Personally, I was keen to squeeze in as much site-seeing as possible and felt I experienced everything I wanted to. Below you will find my account of all the tourist attractions I visited and how I found them as someone with a visual impairment.
Anne Frank House ` `
A note to anyone planning on visiting this attraction, at present it is only possible to do so by purchasing an online ticket in advance. Tickets go on sale two months in advance and sell-out super-fast. We missed out on these tickets and had to purchase introductory programme tickets that are a bit more expensive, which go on sale two weeks before. These also sell-out on the morning they are released. I was unable to purchase tickets with my Supernova screen reader despite the website appearing fairly accessible at a glance. Thankfully the boyfriend was on hand to purchase our tickets. There was no option to buy a discounted disabled ticket.
The pre-talk that was included with the introductory programme ticket was quite interesting and useful especially if you are not completely familiar with the Anne Frank story. After the talk we were able to explore the Anne Frank House and were given audio guides. These were pretty accessible as once you are in a room you just need to wave it around a bit until you hear a beep, which triggers the information to start playing. Obviously it is useful if you can see where the trigger points are, but I was able to activate the audio guide myself in some of the rooms.
It was towards closing time when we visited The House so it wasn’t too crowded although there were bottle necks at times as people navigated the tricky staircases. There weren’t too many objects you could touch, but just being inside the building gave a good feel for the living conditions.
Sex Museum and Red Light District
Ok so it is kind of impossible to go to Amsterdam and not be a tad curious about their openness to sex. The sex museum is fairly visual and so I strongly recommend that if you are visually impaired that you go with someone who isn’t embarrassed to describe some of the exhibits. There are a few interactive features of the museum, I will leave your over active imaginations to guess what they might be. It is a place to go for a bit of a laugh and whilst it claims to guide you through the history of sex, I can’t say that that appears to be its main focus.
I have to admit that I was totally disappointed by The Red Light District. I think I was expecting throngs of sex hungry men to be pressed up against the windows deciding on which woman they wished to purchase. Instead I didn’t even realise I was walking through the district, it could have been a regular street. What I mean to say is there was no atmosphere about the place for somewhere that is so iconic.
Canal Cruise
Amsterdam is famous for its many canals and their canal cruises are popular with tourists. You have to be prepared to do a little queuing even after you have bought your ticket, but they do try to continuously load the boats. Everyone is given an individual audio guide and then the captain also offers additional information. Maybe due to fatigue, but I found the tour somewhat dull. I suspect the city has some beautiful views, I just couldn’t appreciate them and the audio guide didn’t offer much in terms of detailed descriptions.
Van Gogh Museum
The artist is famous for cutting off his ear and his depiction of sunflowers. I have a vivid memory of one of his sunflower paintings as I recall my primary school having a copy on the wall. I also thought I remembered what he looked like, but was stunned to discover that he was ginger. This makes me question how accurate my visual memory is.
The attraction is another that requires you to purchase tickets online in advance, which I didn’t realise until one of my friend’s notified me on the morning we planned to visit. Luckily, I had a quick look at the website after breakfast and discovered that they offered disabled visitors a free companion ticket that could not be purchased online. They allow disabled visitors to just turn up, buy a ticket on the door (note they only accept card payments) and enter through an access entrance that saves queuing. So it all worked out perfectly.
However, I was disappointed to learn that despite paying eighteen euros to get in an audio guide was an additional fee of five euros. I am not entirely sure if they are free as standard for those with a visual impairment, but they did give me one for free when we explained I was blind. Since I was the only one with an audio guide, there was some waiting around for me whilst I listened to the information. The audio guide was not accessible and I required someone to punch in the necessary numbers on my behalf.
The museum is extremely large and set over several floors. Possibly because of this we didn’t come across the 3D replica of one of the sunflower paintings, which I hoped to feel.
Floating Flower Market
In my mind’s eye this appears as a real spectacle as I imagine thousands of flowers in vibrant colours floating on the canal water in lots of pots. In fact it is basically a market that happens to be by the canal. The online description promises that you can smell the sweet and musky aromas. I did sneeze, but failed to smell anything. It is a good place to pick up souvenirs and I did get to see some traditional Dutch clogs.
Ice Bar
This attraction is cool! On arrival you are given three tokens, one can be used in the main warm bar and two in the actual ice bar. The tokens entitle you to free drinks. Prior to entering the ice bar you are given a coat and glove. I brought my own hat and gloves for further insulation. It is a great sensory experience as you can of course feel the minus temperatures, the glasses you get your drinks in are made out of actual ice and there is a polar bear ice sculpture that you can touch. Yet again this is another place where you need to pre-book your tickets in advance online.
Horse and Carriage Ride
Some of the landmarks that we passed on this tour were the same as the canal cruise tour, nevertheless I felt it was a more exciting way to view the city. I fantasised that I had gone back in time as our horse who was called Patrick trotted through the cobbled streets. The tour guide allowed us to give Patrick a fuss at the end, which was a calming activity to conclude a jam-packed few days in Amsterdam.
Friday, 11 May 2018
Duolingo
Apparently 20% of the world’s population can speak English. This means us ignorant Brits can travel the world freely knowing that we will be able to communicate with 1 in 5 people that we come across. We will be surprised when we stumble across someone who doesn’t speak English, but be confident that if we just speak slowly and loudly that we will be understood. English is the language of the world and how very lucky I am that it is my first language. However, I have always wished to be bilingual. I have cursed my mum many a time over the years for not bringing me up bilingually since she is from Mauritius so her mother tongue is French. My dad is also bilingual, he was born in Kenya, but the language of his house-hold was Punjabi. I don’t curse him so much for not bringing me up bilingually yet I am the only cousin who can’t speak Punjabi. If my parents desired, I could have been trilingual! My boyfriend is also bilingual. Although he came to England at the age of 4, his mum made sure that he didn’t lose his birth language and so he can speak Colombian Spanish as well as English. This kind of makes me feel like the only person in the universe who isn’t bilingual!
Since achieving my A* in French at GCSE, obviously helped massively by my mum, I have always regretted not continuing with the language. Over the years I have looked at attending an adult learning course, but have never got as far as applying due to worrying about the accessibility. In this technological era that we live in it never occurred to me that there might be an app to help me learn another language, which seems pretty foolish when I look back now as we all know that there is an app for everything these days. By chance I saw a friend share a link to Duolingo on Face Book and clicked on it to learn more.
Duolingo is brilliant. Not only is it free, it is accessible and allows you to learn at your own pace. I have been using the app in conjunction with the website for around 6 months now and I am thoroughly enjoying learning. In the beginning I tried learning French and Spanish together, but found I was confusing the languages at times so have decided to focus on learning just Spanish for now. Duolingo has a variety of exercises that includes translating sentences from both English to Spanish and Spanish to English as well as speaking and listening exercises. This means I am learning to speak, read, write and understand Spanish, which is great. It is also useful to have the boyfriend to correct my pronunciation and have a practice partner. His mum speaks a lot of Spanish at home and I get excited when I can understand the odd word, then deflated when I realise how far I still have to go before I am remotely fluent in the language.
The Duolingo app works with Voice Over on the iphone, the only slight glitch I have found is that sometimes Voice Over switches into Spanish within an exercise, but the sentence you need to translate is in English so it reads it funny. The work around is to swipe through character by character, a little time consuming, but a work around nonetheless. Personally, if I have access to my laptop then I prefer to use the web version with my Supernova screen reader. I just find it more efficient for typing.
Recently, Duolingo did a major update to their app and website making it no longer accessible to screen reader users. I was very impressed that after I posted about the issue on their troubleshooting forum that they fixed the accessibility issues promptly and notified me when they had done so.
I admire anyone who can seamlessly switch between languages. They make it look so easy yet it really is quite challenging learning a foreign tongue. Now that I have discovered Duolingo I am pretty committed to becoming multilingual although I fear that whenever the opportunity arises I will end up taking the easy way out and conversing with someone in English instead!
Since achieving my A* in French at GCSE, obviously helped massively by my mum, I have always regretted not continuing with the language. Over the years I have looked at attending an adult learning course, but have never got as far as applying due to worrying about the accessibility. In this technological era that we live in it never occurred to me that there might be an app to help me learn another language, which seems pretty foolish when I look back now as we all know that there is an app for everything these days. By chance I saw a friend share a link to Duolingo on Face Book and clicked on it to learn more.
Duolingo is brilliant. Not only is it free, it is accessible and allows you to learn at your own pace. I have been using the app in conjunction with the website for around 6 months now and I am thoroughly enjoying learning. In the beginning I tried learning French and Spanish together, but found I was confusing the languages at times so have decided to focus on learning just Spanish for now. Duolingo has a variety of exercises that includes translating sentences from both English to Spanish and Spanish to English as well as speaking and listening exercises. This means I am learning to speak, read, write and understand Spanish, which is great. It is also useful to have the boyfriend to correct my pronunciation and have a practice partner. His mum speaks a lot of Spanish at home and I get excited when I can understand the odd word, then deflated when I realise how far I still have to go before I am remotely fluent in the language.
The Duolingo app works with Voice Over on the iphone, the only slight glitch I have found is that sometimes Voice Over switches into Spanish within an exercise, but the sentence you need to translate is in English so it reads it funny. The work around is to swipe through character by character, a little time consuming, but a work around nonetheless. Personally, if I have access to my laptop then I prefer to use the web version with my Supernova screen reader. I just find it more efficient for typing.
Recently, Duolingo did a major update to their app and website making it no longer accessible to screen reader users. I was very impressed that after I posted about the issue on their troubleshooting forum that they fixed the accessibility issues promptly and notified me when they had done so.
I admire anyone who can seamlessly switch between languages. They make it look so easy yet it really is quite challenging learning a foreign tongue. Now that I have discovered Duolingo I am pretty committed to becoming multilingual although I fear that whenever the opportunity arises I will end up taking the easy way out and conversing with someone in English instead!
Wednesday, 3 January 2018
The Great Cane Debate
As part of RNIB’s How I See campaign, they released a video that debates whether the cane, (a mobility aid used by visually impaired people) should be the standard black and white, (black handle with white body) or whether it is ok for the cane to be colourful. You can view the video here.
There is a fear that if the cane is not the standard black and white then the public may get confused with regards to what it symbolises. In my opinion, I believe it is more than acceptable for a visually impaired person to use whatever colour cane they wish as long as it is being used in the correct manner. Just because blind people can’t see should they be subjected to a colourless black and white world? People without a visual impairment use cars and other means of transport to get around. If a lorry is white or red, we still know it is a lorry and if a person is using a wheelchair is it important that it has blue or pink rims? No. Other people are allowed to customise their mobility aids, so why can’t we?
To emphasise my argument, I thought I would share my cane journey with you. I was first introduced to a cane at about the age of twelve. I had no interest in using an object that screamed ‘I have a visual impairment’. In an act of rebellion I remember storming out of my house and walked to a friend’s without using my cane. Worried for my safety my dad jumped in his car and curb-crawled behind me, which prompted a member of the public to stop me and alert me to the fact that a man was following me! After that incident, I reluctantly agreed to use my cane outside of school. When I was around my friends I wouldn’t use it properly at all and would often use it as a comical prop. In particular I recall pretending that my cane was like a dog lead and I was being dragged along by said dog much to my friends amusement. I had to try and make the cane cool.
By the age of sixteen my sight had deteriorated to a level where for my safety I was encouraged to use my cane at school. So I began using it at the start of sixth form, which at my school was also the year you no longer wore school uniform. I hated sticking out like a sore thumb with my cane and as Christmas approached I decided if everyone was going to be staring at me, then I would give them something to stare at. I purchased some white tinsel and wrapped it around my cane from head to foot. It helped my confidence when I received positive feedback about something I despised using.
By the age of nineteen I had lost any useful vision, so could no longer distinguish colours or shapes. I guess out of rebellion to losing my colour vision I ordered a pink cane (black handle with pink body). It had to be imported from Canada. I wouldn’t call myself a trend setter, but I was one of the first people to start using a coloured cane in Britain. For me the pink represented that despite being blind I still cared for coloured things in the same way I did as when I had vision. Not once when I used my pink cane did someone not know what it represented. It was also useful when with other visually impaired people because I knew which cane was mine!
A couple of years ago I changed my cane to an accented one instead. So, my current cane has a blue handle and white body. This is because I feel I have matured and the new style has more of a professional appearance. All pink is cool and fun, but a blue and white combination spells sophistication. It still offers a sense of individuality.
Customising my cane over the years has helped me to accept my visual impairment. We are all individuals and should be allowed to express ourselves in whatever civilised way we choose. That’s how I see it anyway!
There is a fear that if the cane is not the standard black and white then the public may get confused with regards to what it symbolises. In my opinion, I believe it is more than acceptable for a visually impaired person to use whatever colour cane they wish as long as it is being used in the correct manner. Just because blind people can’t see should they be subjected to a colourless black and white world? People without a visual impairment use cars and other means of transport to get around. If a lorry is white or red, we still know it is a lorry and if a person is using a wheelchair is it important that it has blue or pink rims? No. Other people are allowed to customise their mobility aids, so why can’t we?
To emphasise my argument, I thought I would share my cane journey with you. I was first introduced to a cane at about the age of twelve. I had no interest in using an object that screamed ‘I have a visual impairment’. In an act of rebellion I remember storming out of my house and walked to a friend’s without using my cane. Worried for my safety my dad jumped in his car and curb-crawled behind me, which prompted a member of the public to stop me and alert me to the fact that a man was following me! After that incident, I reluctantly agreed to use my cane outside of school. When I was around my friends I wouldn’t use it properly at all and would often use it as a comical prop. In particular I recall pretending that my cane was like a dog lead and I was being dragged along by said dog much to my friends amusement. I had to try and make the cane cool.
By the age of sixteen my sight had deteriorated to a level where for my safety I was encouraged to use my cane at school. So I began using it at the start of sixth form, which at my school was also the year you no longer wore school uniform. I hated sticking out like a sore thumb with my cane and as Christmas approached I decided if everyone was going to be staring at me, then I would give them something to stare at. I purchased some white tinsel and wrapped it around my cane from head to foot. It helped my confidence when I received positive feedback about something I despised using.
By the age of nineteen I had lost any useful vision, so could no longer distinguish colours or shapes. I guess out of rebellion to losing my colour vision I ordered a pink cane (black handle with pink body). It had to be imported from Canada. I wouldn’t call myself a trend setter, but I was one of the first people to start using a coloured cane in Britain. For me the pink represented that despite being blind I still cared for coloured things in the same way I did as when I had vision. Not once when I used my pink cane did someone not know what it represented. It was also useful when with other visually impaired people because I knew which cane was mine!
A couple of years ago I changed my cane to an accented one instead. So, my current cane has a blue handle and white body. This is because I feel I have matured and the new style has more of a professional appearance. All pink is cool and fun, but a blue and white combination spells sophistication. It still offers a sense of individuality.
Customising my cane over the years has helped me to accept my visual impairment. We are all individuals and should be allowed to express ourselves in whatever civilised way we choose. That’s how I see it anyway!
Sunday, 3 December 2017
A Day To Celebrate?
There is a day, week and month for everything these days. From National Cup Cake Day to Autism Awareness Week and Movember. All have the same aim of celebrating and/or promoting a particular cause. Today is International Day of Persons with Disabilities. However, I’m not really feeling in the mood to celebrate my blindness. Whilst I accept my disability, I wouldn’t say I’m proud to be blind. It isn’t an attribute I have chosen, it is one that was written in my DNA. In the same way I’m not one of those people who is proud to be female or Asian. It is just who I am. Nevertheless, I am proud of some of the things I have achieved despite my disability. Gaining a First Class degree in English Language and Literature and representing England at the Commonwealth Games taking the top spots.
I harp on about it a lot, but us disabled Brits are so lucky to live in such a disability friendly country. On this day of raising awareness of people with disabilities, I would like to remind people that not all disabled people are as privileged. Even in this day and age, there are millions of disabled people who are hidden away by their families. Then there are the ones who literally can’t leave their homes because their country is inaccessible.
Whilst today is my day, I would like to take the opportunity to thank my Guide Dog Calvin for his 8 years of service to me, the government for supporting me financially, my employer for giving me a job and my friends and family who all allow me to live an independent and fulfilling life. Thanks to them living with a disability really isn’t so bad.
I harp on about it a lot, but us disabled Brits are so lucky to live in such a disability friendly country. On this day of raising awareness of people with disabilities, I would like to remind people that not all disabled people are as privileged. Even in this day and age, there are millions of disabled people who are hidden away by their families. Then there are the ones who literally can’t leave their homes because their country is inaccessible.
Whilst today is my day, I would like to take the opportunity to thank my Guide Dog Calvin for his 8 years of service to me, the government for supporting me financially, my employer for giving me a job and my friends and family who all allow me to live an independent and fulfilling life. Thanks to them living with a disability really isn’t so bad.
Friday, 10 November 2017
Disability and Dignity
As part of my job I always ask people ‘how is your dignity maintained’? I often wonder as a disabled person if it is truly possible to maintain your dignity and earn respect. Of course, I can only speak from a visually impaired perspective. It seems to be the era to break the silence and end the awkward hence I thought I would share some of my less dignified daily experiences. The following feel like a taboo to talk about yet have most likely happened to the majority of visually impaired people.
Let’s start off with one of my daily struggles, needing the toilet! We all need to empty our bladders, but it is one of the most frustrating parts of being human. At school I would not use the toilet in a school day unless the pain of crossing my legs reached its ultimate limit. Although I was partially sighted in my school days I avoided the little girls room because it was always filled with the smokers at break and lunchtimes who scowled at you as you entered. Once in the bathroom the next hurdle was trying to establish which cubicle was free. Since the cubicle doors and the frames were all a pale grey I didn’t have the depth perception to see if a door was ajar or locked. The only way I could locate a vacant cubicle was by gently pushing on each door to see if it opened, an action I really didn’t want to perform in front of an audience. So, it was just easier to not go to the toilet.
I would love to say now that I’m nearly thirty that I no longer worry about needing to spend a penny. However, I think it is going to be like one of those poos that no matter how many times you flush they just keep floating back to the surface! Earlier this year I went on a first date. Before meeting the stranger I ensured that my train assistance guided me to the ladies prior to helping me to the exit. Whilst it was an amazing day that I will never forget, I will always remember being too afraid of asking him to guide me to the toilet. It was on the tip of my tongue on numerous occasions yet I couldn’t face the humiliation of publically announcing that I needed to urinate. Thankfully, I plucked up the courage on our second date after having some serious words with myself.
When you are in an unfamiliar environment there is no way you can avoid asking someone where the bathroom is. On the bright side once you are inside at least nobody is watching when you casually bounce off the walls in search of the loo or when you are wildly waving your hands around in order to find the flush. Last month I was on a busy train to London on the way to see Harry Potter and the Cursed Child with audio description which I highly recommend watching if you can get tickets. Anyway, I’m sure many people will agree that whoever invented button operated toilets for trains needs to be shot! Routinely, I will always use the toilet before boarding a train, knowing that it will be very difficult to do so once travelling. Unfortunately, I arrived at the station with only three minutes to spare before my train departed. Aware of my need, the train assistance sat me directly opposite the toilet. As the train trundled along the tracks I listened intently to the toilet door sliding open and close, but I couldn’t actually work out when it was available. There was a nice old man next to me who had already engaged me in conversation as soon as I sat down, a personal pet hate of mine when travelling on public transport, though on this occasion worked to my advantage as it was easier to ask him if he knew if the toilet was in use. This was obviously code for ‘please help me, I’m busting’!
The nice old man offered to show me where the open, close and lock buttons were in the toilet, right after he had bellowed to the carriage to clear the way so I could make the two steps over to the facility! With a tight smile I thanked the gentleman for his help and frantically jabbed on the close door button so I could die of embarrassment in private. To my horror the door wouldn’t close, which resulted in the entire carriage jumping to my aid. After all buttons had been pressed by various people with no success, the toilet calmly flashed an ‘out of order’ sign, which meant I had to sheepishly return to my seat and cross my legs until Euston.
A skill you acquire when you are blind is the ability to recognise people’s voices. Generally, I’m quite good at this, although admittedly I can’t put a name to every one of my 24 Brownies voices. When you are in a situation like going to a friend’s house and you know who is going to be there it makes it easier to distinguish who is who. The nightmare occurs when you are out in public and a voice is out of context. I was out shopping recently and a random voice called my name. Totally on auto pilot I replied ‘hey’ in a sociable tone. They then proceeded to come over and said ‘it’s me’! We began exchanging pleasantries whilst my brain went into overdrive trying to label the anonymous voice. It only took a few seconds for me to properly realise who I was speaking to, but my friend fully expected me to know who she was even though I hadn’t seen her for over a year!
Voices are sneaky things, they move without warning. You can be in a full blown conversation with someone then they will suddenly reply from over your shoulder when you were certain the person was still standing in front of you. Or sometimes you find yourself asking the atmosphere if they had a good holiday? A feeling of bemusement sets in until you realise that there is nobody there to respond, which makes you wonder if apparition is real.
Another issue with voices is that they don’t always tell you that they are speaking to you. The consequences of this can be fatal since the voice either concludes that you are being rude for not answering or they believe you are disrespectful for talking in someone else’s place. Once when I was waiting for a train at my local station a lady may have or may not have said hello to me. Small talk ensued until I clocked that the lady was in fact on the phone and therefore not conversing with me at all even though I was politely replying and reacting to all of her questions. Yes I felt immensely stupid and the train couldn’t come fast enough!
Social situations can be tough when you are blind and the one thing I’m awful at is greetings. Do you shake hands? Hug? Kiss? If kiss, is it just one on the cheek or one on each cheek? The best way to deal with this is by taking the initiative first, but I always forget. The amount of times someone has put their hand out waiting for me to shake it and I have unconsciously blanked them is unreal. If I’m with someone they will grab my wrist and thrust my hand into the other person’s hand whilst I psychologically face palm. I never learn. Then there are the times when someone decides to go in for a hug when you are not expecting it. The hugger inadvertently clamps down your arms and you end up giving the other person an awkward pat on the back since you can’t physically lift up your arms to return the gesture properly. It just isn’t cool. Let’s not forget the kissing dance, both of you turn your head the same way and disaster strikes as you brush each other’s lips instead of your cheeks!
Finally, there is the tricky task of eating elegantly in public. At home all of my knives have grooves on them so before I eat I swipe the knife with my fork and can hear if my knife is the right way around before I cut something. However, at other people’s houses and in restaurants not all knives have this feature meaning I might try and slice my meal with the knife upside down. Forks are fiddly pieces of equipment too. You stab a chip with the prongs, but when the fork reaches your mouth you find yourself taking a bite of pure metal as the chip failed to survive the trip from plate to lips. Sometimes, when you eat what actually manages to reach your lips can be somewhat of a surprise. For instance the food item may be larger than you anticipated or you might discover that you have just taken a chunk out of a lemon or lettuce leaf. In these situations you have to do your best to style out the munching as much as you want to either spit the food back on to the plate or contort your face into a disgusted expression. One time a friend offered me some nuts at his house and I eagerly popped one into my mouth. I exclaimed ‘these are a little hard’ and he burst out laughing because I hadn’t removed the shell! Whoopsy!
I think that it is pretty evident that maintaining your dignity and functioning as a respectful member of society is practically impossible when you are visually impaired. It can be very easy to get down, feel embarrassed or direct anger towards the public. We could hide away in our homes where we have access to a toilet, can check our caller IDs on our phones to see who is calling and drop food down us unintentionally until our hearts are content. Realistically, social isolation is not the ideal solution. Personally, I believe we just need to adopt a sense of humour, take those cringe worthy moments with a pinch of salt and enjoy living life. Everybody makes mistakes, it is an essential part of being human.
Let’s start off with one of my daily struggles, needing the toilet! We all need to empty our bladders, but it is one of the most frustrating parts of being human. At school I would not use the toilet in a school day unless the pain of crossing my legs reached its ultimate limit. Although I was partially sighted in my school days I avoided the little girls room because it was always filled with the smokers at break and lunchtimes who scowled at you as you entered. Once in the bathroom the next hurdle was trying to establish which cubicle was free. Since the cubicle doors and the frames were all a pale grey I didn’t have the depth perception to see if a door was ajar or locked. The only way I could locate a vacant cubicle was by gently pushing on each door to see if it opened, an action I really didn’t want to perform in front of an audience. So, it was just easier to not go to the toilet.
I would love to say now that I’m nearly thirty that I no longer worry about needing to spend a penny. However, I think it is going to be like one of those poos that no matter how many times you flush they just keep floating back to the surface! Earlier this year I went on a first date. Before meeting the stranger I ensured that my train assistance guided me to the ladies prior to helping me to the exit. Whilst it was an amazing day that I will never forget, I will always remember being too afraid of asking him to guide me to the toilet. It was on the tip of my tongue on numerous occasions yet I couldn’t face the humiliation of publically announcing that I needed to urinate. Thankfully, I plucked up the courage on our second date after having some serious words with myself.
When you are in an unfamiliar environment there is no way you can avoid asking someone where the bathroom is. On the bright side once you are inside at least nobody is watching when you casually bounce off the walls in search of the loo or when you are wildly waving your hands around in order to find the flush. Last month I was on a busy train to London on the way to see Harry Potter and the Cursed Child with audio description which I highly recommend watching if you can get tickets. Anyway, I’m sure many people will agree that whoever invented button operated toilets for trains needs to be shot! Routinely, I will always use the toilet before boarding a train, knowing that it will be very difficult to do so once travelling. Unfortunately, I arrived at the station with only three minutes to spare before my train departed. Aware of my need, the train assistance sat me directly opposite the toilet. As the train trundled along the tracks I listened intently to the toilet door sliding open and close, but I couldn’t actually work out when it was available. There was a nice old man next to me who had already engaged me in conversation as soon as I sat down, a personal pet hate of mine when travelling on public transport, though on this occasion worked to my advantage as it was easier to ask him if he knew if the toilet was in use. This was obviously code for ‘please help me, I’m busting’!
The nice old man offered to show me where the open, close and lock buttons were in the toilet, right after he had bellowed to the carriage to clear the way so I could make the two steps over to the facility! With a tight smile I thanked the gentleman for his help and frantically jabbed on the close door button so I could die of embarrassment in private. To my horror the door wouldn’t close, which resulted in the entire carriage jumping to my aid. After all buttons had been pressed by various people with no success, the toilet calmly flashed an ‘out of order’ sign, which meant I had to sheepishly return to my seat and cross my legs until Euston.
A skill you acquire when you are blind is the ability to recognise people’s voices. Generally, I’m quite good at this, although admittedly I can’t put a name to every one of my 24 Brownies voices. When you are in a situation like going to a friend’s house and you know who is going to be there it makes it easier to distinguish who is who. The nightmare occurs when you are out in public and a voice is out of context. I was out shopping recently and a random voice called my name. Totally on auto pilot I replied ‘hey’ in a sociable tone. They then proceeded to come over and said ‘it’s me’! We began exchanging pleasantries whilst my brain went into overdrive trying to label the anonymous voice. It only took a few seconds for me to properly realise who I was speaking to, but my friend fully expected me to know who she was even though I hadn’t seen her for over a year!
Voices are sneaky things, they move without warning. You can be in a full blown conversation with someone then they will suddenly reply from over your shoulder when you were certain the person was still standing in front of you. Or sometimes you find yourself asking the atmosphere if they had a good holiday? A feeling of bemusement sets in until you realise that there is nobody there to respond, which makes you wonder if apparition is real.
Another issue with voices is that they don’t always tell you that they are speaking to you. The consequences of this can be fatal since the voice either concludes that you are being rude for not answering or they believe you are disrespectful for talking in someone else’s place. Once when I was waiting for a train at my local station a lady may have or may not have said hello to me. Small talk ensued until I clocked that the lady was in fact on the phone and therefore not conversing with me at all even though I was politely replying and reacting to all of her questions. Yes I felt immensely stupid and the train couldn’t come fast enough!
Social situations can be tough when you are blind and the one thing I’m awful at is greetings. Do you shake hands? Hug? Kiss? If kiss, is it just one on the cheek or one on each cheek? The best way to deal with this is by taking the initiative first, but I always forget. The amount of times someone has put their hand out waiting for me to shake it and I have unconsciously blanked them is unreal. If I’m with someone they will grab my wrist and thrust my hand into the other person’s hand whilst I psychologically face palm. I never learn. Then there are the times when someone decides to go in for a hug when you are not expecting it. The hugger inadvertently clamps down your arms and you end up giving the other person an awkward pat on the back since you can’t physically lift up your arms to return the gesture properly. It just isn’t cool. Let’s not forget the kissing dance, both of you turn your head the same way and disaster strikes as you brush each other’s lips instead of your cheeks!
Finally, there is the tricky task of eating elegantly in public. At home all of my knives have grooves on them so before I eat I swipe the knife with my fork and can hear if my knife is the right way around before I cut something. However, at other people’s houses and in restaurants not all knives have this feature meaning I might try and slice my meal with the knife upside down. Forks are fiddly pieces of equipment too. You stab a chip with the prongs, but when the fork reaches your mouth you find yourself taking a bite of pure metal as the chip failed to survive the trip from plate to lips. Sometimes, when you eat what actually manages to reach your lips can be somewhat of a surprise. For instance the food item may be larger than you anticipated or you might discover that you have just taken a chunk out of a lemon or lettuce leaf. In these situations you have to do your best to style out the munching as much as you want to either spit the food back on to the plate or contort your face into a disgusted expression. One time a friend offered me some nuts at his house and I eagerly popped one into my mouth. I exclaimed ‘these are a little hard’ and he burst out laughing because I hadn’t removed the shell! Whoopsy!
I think that it is pretty evident that maintaining your dignity and functioning as a respectful member of society is practically impossible when you are visually impaired. It can be very easy to get down, feel embarrassed or direct anger towards the public. We could hide away in our homes where we have access to a toilet, can check our caller IDs on our phones to see who is calling and drop food down us unintentionally until our hearts are content. Realistically, social isolation is not the ideal solution. Personally, I believe we just need to adopt a sense of humour, take those cringe worthy moments with a pinch of salt and enjoy living life. Everybody makes mistakes, it is an essential part of being human.
Friday, 20 October 2017
Why?
In life, we ask lots of questions. Why is the sky blue? What came first, the chicken or the egg? If a tree falls in the forest and there is nobody there to hear it, does it still make a noise? Thanks to science we have learnt the answers to many of life’s conundrums. However, sometimes we are just left with multiple theories and it is up to us to choose which we believe, if any. I was and will always be the first female in the world to be diagnosed with Norrie’s Disease. But for as long as I can remember I have asked myself and the professionals why did this happen to me? How can a condition that is only supposed to affect males been passed on to me? Why wasn’t I born totally blind like my male family members with the condition? Over the years I have heard numerous theories, but nobody seemed interested in finding out the real reason other than me.
It has taken over a year of referrals and appointments, but I finally have some answers. It has been a few years now since I came to terms with losing my sight, yet I can honestly say I have never come to terms with having Norrie’s Disease itself. Until now that is. A part of me was convinced that I had a different condition despite my family history and Norrie like symptoms. Whilst I have always claimed to have Norrie’s Disease I have often felt like a fraud when communicating with others about the condition, especially when people have asked how I have it and I never had any firm facts.
Scientifically speaking, female carriers of Norrie’s Disease have a one in four chance of having a child affected by Norrie’s Disease. Technically, if the child is a boy there is a 50% chance that they will present with the condition and if a girl there is a 50% chance that they will be a carrier of the condition. This is because Norrie’s Disease is an X-linked condition. Theoretically, a female should not present with symptoms of the condition as they have two X chromosomes and therefore should activate the Norrie gene on the spare chromosome. Males present with the condition because they only have one X chromosome.
When I began to present with symptoms of Norrie’s Disease at the age of two, I did undergo genetic testing. However, at that time they did not know the location of the Norrie gene nor did they have the ability to test for the reason why I have the condition. Without my knowledge my blood sample was re-tested in 2004 due to the advancements in technology. I only received the results in August at an appointment that I fought tooth and nail for. The tests revealed that I have a mutation on the Norrie gene confirming that I am definitely a carrier of Norrie’s Disease. Although I have always suspected this was the case, it was quite gutting to hear that I could potentially pass Norrie’s Disease on to my children. The results also indicated that I most likely had skewed X inactivation syndrome.
They took more blood on the day from myself and my mum in order to run further tests. I received the results last week, which stated I have significant skewed X inactivation meaning I activated more genes on my maternal X one of course being the mutated Norrie gene. Thus explaining why I have Norrie’s Disease. At some point after conception, females activate genes on their X chromosomes. Normally, they activate approximately 50% on each. For whatever reason, I chose to activate more of my mum’s genes. She has always joked when I was born she thought she had cloned me because my appearance was so alike to hers! Lots of females might have skewed X inactivation, but not know about it since they haven’t activated a faulty gene.
It is so good to have some proper answers. I know it doesn’t change the fact that I have Norrie’s Disease and it can’t bring back my sight. If anything it has unleashed a new can of worms as I know I’m a carrier of the condition and know I am set on having children. Nevertheless, it has given me closure. I can confidently say I have Norrie’s Disease and I now know why.
It has taken over a year of referrals and appointments, but I finally have some answers. It has been a few years now since I came to terms with losing my sight, yet I can honestly say I have never come to terms with having Norrie’s Disease itself. Until now that is. A part of me was convinced that I had a different condition despite my family history and Norrie like symptoms. Whilst I have always claimed to have Norrie’s Disease I have often felt like a fraud when communicating with others about the condition, especially when people have asked how I have it and I never had any firm facts.
Scientifically speaking, female carriers of Norrie’s Disease have a one in four chance of having a child affected by Norrie’s Disease. Technically, if the child is a boy there is a 50% chance that they will present with the condition and if a girl there is a 50% chance that they will be a carrier of the condition. This is because Norrie’s Disease is an X-linked condition. Theoretically, a female should not present with symptoms of the condition as they have two X chromosomes and therefore should activate the Norrie gene on the spare chromosome. Males present with the condition because they only have one X chromosome.
When I began to present with symptoms of Norrie’s Disease at the age of two, I did undergo genetic testing. However, at that time they did not know the location of the Norrie gene nor did they have the ability to test for the reason why I have the condition. Without my knowledge my blood sample was re-tested in 2004 due to the advancements in technology. I only received the results in August at an appointment that I fought tooth and nail for. The tests revealed that I have a mutation on the Norrie gene confirming that I am definitely a carrier of Norrie’s Disease. Although I have always suspected this was the case, it was quite gutting to hear that I could potentially pass Norrie’s Disease on to my children. The results also indicated that I most likely had skewed X inactivation syndrome.
They took more blood on the day from myself and my mum in order to run further tests. I received the results last week, which stated I have significant skewed X inactivation meaning I activated more genes on my maternal X one of course being the mutated Norrie gene. Thus explaining why I have Norrie’s Disease. At some point after conception, females activate genes on their X chromosomes. Normally, they activate approximately 50% on each. For whatever reason, I chose to activate more of my mum’s genes. She has always joked when I was born she thought she had cloned me because my appearance was so alike to hers! Lots of females might have skewed X inactivation, but not know about it since they haven’t activated a faulty gene.
It is so good to have some proper answers. I know it doesn’t change the fact that I have Norrie’s Disease and it can’t bring back my sight. If anything it has unleashed a new can of worms as I know I’m a carrier of the condition and know I am set on having children. Nevertheless, it has given me closure. I can confidently say I have Norrie’s Disease and I now know why.
Thursday, 22 June 2017
Blind in Britain
If you look at Face Book and Twitter, you would be tricked into thinking that Britain is a terrible place to live if you have a visual impairment. Whilst people with disabilities in this country face barriers on a daily basis, quite often in relation to accessibility, I feel that it is important to highlight how great it actually is to be blind in Britain. I recognise that it is only so good thanks to people constantly campaigning for change, but after being out and about last weekend it really hit home how lucky I am to live in such a disability friendly country.
To give you a bit of background, on Saturday I needed to travel through London to get to my final destination and I needed to repeat the process in reverse on Sunday. Travelling through London solo is something that I have only done once before and that was with Calvin my Guide Dog who gives me more confidence when I’m out travelling by myself. This time it was just me, my cane and the added anxiety of the recent terror attacks. Firstly, before I have even started my journey, I am able to get 1/3 off of my ticket fair with my disabled railcard. There is assistance at my local train station that helps me board the train, find a seat and notifies St Pancras that I am on my way. I am met immediately at the other end by assistance who guide me to the underground and their staff. Straight away someone is available to assist me on to the tube and alerts Paddington to my arrival at the other end. However, once I have boarded the tube and travel a couple of stops an announcement informs us that the train will terminate earlier than planned and advises everybody to get off at the next stop. Quickly I am infused by a wave of panic as I know there is no assistance waiting for me to help me continue my journey. The tears start flowing and the general public rush to my aid, several people willing to help me. Before they can, a member of the underground staff lets me know he has called for another staff member to help me. I make it to Paddington and although I have missed my train connection, I am offered assistance instantly to get the next train that departs in 3 minutes time. They phone ahead to Reading to ensure that I am still met despite travelling on a later service and can get another connection to reach my final destination. When I reflect, it was completely unnecessary for me to have worried in the slightest and it turned out to be the perfect warm-up for the following day.
On Sunday, my return journey started off badly with a 20 minutes train delay. I made it back to St Pancras with the same seamless assistance as the previous day, only to discover that all trains back home had been cancelled. If this was Saturday I would have been hysterical, but this time I was able to keep my head. The StPancras staff member I was with was so helpful in ensuring I found an alternative route home even though his shift was just about to finish. I had to get back on the underground and made my way to Euston. Unfortunately I had narrowly missed my alternative train and had to wait nearly an hour for the next service. In this time someone was able to assist me to use the toilet and I watched in awe as the assistance hub worked tirelessly to make sure people caught their trains. They were clearly under staffed, but even when people arrived with very little time before their train they went above and beyond to enable them to catch it. A journey that was meant to take me about 3 hours instead took me over 6 and a half hours. It was mentally and physically exhausting as well as challenging. Nevertheless, I made it home thanks to dozens of people helping me on the way, both paid members of staff and the general public.
Unsurprisingly, the 6 and a half hour journey gave me lots of thinking time. The list below demonstrates some of the reasons why it is so good to be blind in Britain:
1. Train assistance
2. Disabled person’s railcard (1/3 discount on train fair)
3. National bus pass
4. Tactile markings on the pavement indicating a safe place to cross
5. Tactile spinning cone underneath controlled crossing boxes indicating when it is safe to cross
6. Braille in lifts
7. Braille on medication
8. Talking cash points (ATMs)
9. Audio description on TV, in the cinema and at the theatre
10. Guide Dogs and their right to access all public spaces
11. Disability benefits (DLA, PIP, ESA, Blind person’s tax allowance, disability working tax credit)
12. Access to Work Scheme
13. Discounts for leisure activities usually buy 1 get 1 free (cinema, concerts, theatre, theme parks and other attractions)
14. Specialist visually impaired hotels (Windermere, Teignmouth)
15. Specialist holiday companies (Traveleyes, Seeable)
16. Multiple charities that offer services (RNIB, VICTA, Look, Blind in Business etc)
17. RNIB library (free books in Braille, large print and audio)
18. Accessible menus in many restaurants (large print/Braille)
19. Access to top eye hospitals (Moorfields, Manchester Eye Hospital etc)
20. Accessible banking (talking pin century reader, bank statements in an accessible format)
21. Accessible voting
22. The general public (people aren’t scared to help)
Some people will grumble that the above doesn’t always work or go to plan and they are right, we don’t live in a perfect society. My argument is that we are incredibly privileged to have the option of such a vast variety of services and facilities that allows the visually impaired community to lead independent and fulfilling lives.
To give you a bit of background, on Saturday I needed to travel through London to get to my final destination and I needed to repeat the process in reverse on Sunday. Travelling through London solo is something that I have only done once before and that was with Calvin my Guide Dog who gives me more confidence when I’m out travelling by myself. This time it was just me, my cane and the added anxiety of the recent terror attacks. Firstly, before I have even started my journey, I am able to get 1/3 off of my ticket fair with my disabled railcard. There is assistance at my local train station that helps me board the train, find a seat and notifies St Pancras that I am on my way. I am met immediately at the other end by assistance who guide me to the underground and their staff. Straight away someone is available to assist me on to the tube and alerts Paddington to my arrival at the other end. However, once I have boarded the tube and travel a couple of stops an announcement informs us that the train will terminate earlier than planned and advises everybody to get off at the next stop. Quickly I am infused by a wave of panic as I know there is no assistance waiting for me to help me continue my journey. The tears start flowing and the general public rush to my aid, several people willing to help me. Before they can, a member of the underground staff lets me know he has called for another staff member to help me. I make it to Paddington and although I have missed my train connection, I am offered assistance instantly to get the next train that departs in 3 minutes time. They phone ahead to Reading to ensure that I am still met despite travelling on a later service and can get another connection to reach my final destination. When I reflect, it was completely unnecessary for me to have worried in the slightest and it turned out to be the perfect warm-up for the following day.
On Sunday, my return journey started off badly with a 20 minutes train delay. I made it back to St Pancras with the same seamless assistance as the previous day, only to discover that all trains back home had been cancelled. If this was Saturday I would have been hysterical, but this time I was able to keep my head. The StPancras staff member I was with was so helpful in ensuring I found an alternative route home even though his shift was just about to finish. I had to get back on the underground and made my way to Euston. Unfortunately I had narrowly missed my alternative train and had to wait nearly an hour for the next service. In this time someone was able to assist me to use the toilet and I watched in awe as the assistance hub worked tirelessly to make sure people caught their trains. They were clearly under staffed, but even when people arrived with very little time before their train they went above and beyond to enable them to catch it. A journey that was meant to take me about 3 hours instead took me over 6 and a half hours. It was mentally and physically exhausting as well as challenging. Nevertheless, I made it home thanks to dozens of people helping me on the way, both paid members of staff and the general public.
Unsurprisingly, the 6 and a half hour journey gave me lots of thinking time. The list below demonstrates some of the reasons why it is so good to be blind in Britain:
1. Train assistance
2. Disabled person’s railcard (1/3 discount on train fair)
3. National bus pass
4. Tactile markings on the pavement indicating a safe place to cross
5. Tactile spinning cone underneath controlled crossing boxes indicating when it is safe to cross
6. Braille in lifts
7. Braille on medication
8. Talking cash points (ATMs)
9. Audio description on TV, in the cinema and at the theatre
10. Guide Dogs and their right to access all public spaces
11. Disability benefits (DLA, PIP, ESA, Blind person’s tax allowance, disability working tax credit)
12. Access to Work Scheme
13. Discounts for leisure activities usually buy 1 get 1 free (cinema, concerts, theatre, theme parks and other attractions)
14. Specialist visually impaired hotels (Windermere, Teignmouth)
15. Specialist holiday companies (Traveleyes, Seeable)
16. Multiple charities that offer services (RNIB, VICTA, Look, Blind in Business etc)
17. RNIB library (free books in Braille, large print and audio)
18. Accessible menus in many restaurants (large print/Braille)
19. Access to top eye hospitals (Moorfields, Manchester Eye Hospital etc)
20. Accessible banking (talking pin century reader, bank statements in an accessible format)
21. Accessible voting
22. The general public (people aren’t scared to help)
Some people will grumble that the above doesn’t always work or go to plan and they are right, we don’t live in a perfect society. My argument is that we are incredibly privileged to have the option of such a vast variety of services and facilities that allows the visually impaired community to lead independent and fulfilling lives.
Wednesday, 17 May 2017
Norrie Disease
As previously mentioned on my blog, I have a rare genetic condition called Norrie Disease which primarily affects the eyes. It is only meant to affect males, but somehow I defied the odds and was the first female in the world to be diagnosed with the condition. My older brother and 2 uncles also have/had Norrie Disease. Ever since I have had access to the internet I recall Googling, desperate to find out more information about this condition that has not only had a massive impact upon my life, but my family’s too. It is surprising to think in this day and age that even now it is difficult to find accurate and detailed information about Norrie Disease. At the moment I am waiting for genetic testing in order to try and fully understand how I have managed to present with the condition and I am also keen to learn how my genetic makeup will affect my children if I am lucky enough to have them one day. I am certain that I am a carrier of Norrie Disease, so it is something that could potentially impact on my family in generations to come. Norrie Disease has stolen my vision and it is beginning to steal my hearing. Whilst I am an individual who is intent on not allowing their disability stopping them from leading a fulfilling life, I can’t escape from the fact that I have Norrie Disease and always will.
Last Saturday, something exciting happened. It was the launch of The Norrie Disease Foundation. It is the first UK based charity setup to support those affected by Norrie Disease. Their aim is to connect Norrie Disease families as well as promote vital new research into the condition. Unfortunately, I was unable to attend the launch. However, I am very grateful to those who have put in the hard work to make this much needed charity a reality. I am looking forward to seeing what The Norrie Disease Foundation can achieve and getting involved with the Norrie community.
To visit The Norrie Disease Foundation website, just click here.
Last Saturday, something exciting happened. It was the launch of The Norrie Disease Foundation. It is the first UK based charity setup to support those affected by Norrie Disease. Their aim is to connect Norrie Disease families as well as promote vital new research into the condition. Unfortunately, I was unable to attend the launch. However, I am very grateful to those who have put in the hard work to make this much needed charity a reality. I am looking forward to seeing what The Norrie Disease Foundation can achieve and getting involved with the Norrie community.
To visit The Norrie Disease Foundation website, just click here.
Sunday, 5 February 2017
Traveleyes
Traveleyes is a company that organises group holidays for not only visually impaired people, but sighted travellers too. Their slogan is ‘share the adventure’. To make it enticing for both visually impaired and sighted travellers they have two main selling points. If you are visually impaired, you can book on to a holiday as an individual with the knowledge that you will be provided with sighted assistance throughout your trip and therefore have the opportunity to explore the world independently, a task that would otherwise be quite challenging or near impossible. If you are sighted, you can book on to a holiday at a substantially discounted rate, sometimes up to 50% less than what a visually impaired traveller is required to pay. It is then expected that you are prepared to ‘lend your eyes’ to the visually impaired participants throughout the trip. Ultimately, everyone gets to discover a destination with likeminded people.
Traveleyes have been on my radar for some time. I have been lucky enough to travel to lots of countries over the years, but when I holiday with my family we rarely go on organised excursions opting instead to stay around the hotel or self-explore. This has always been fine and something I plan on continuing to do. However, I also want to experience the world in a more adventurous manner. So last year when I saw Traveleyes release their holiday to The Gambia and one of the tour highlights was seeing monkeys in the wild (my favourite animal), I was immediately interested.
The thought process had to be quite quick since Traveleyes always emphasise how popular their holidays are at the bottom of their promotional emails and I know through word of mouth that places get snapped up pretty fast. So, within less than 24hrs of the trip being advertised, I decided that I definitely wanted to go and to my surprise my family were keen to come too, making us two sighted and two visually impaired travellers. It was the weekend so I registered our interest through the website and found out on the Monday that the trip was already fully booked, but we would be placed on a waiting list. I honestly couldn’t believe at just how speedily the places did go. The following week we were informed that they had increased the number of places available due to popular demand and we could now go. A deposit was paid with the full balance due 12 weeks prior to our departure date.
Right now, I should be boarding the plane to The Gambia. Only I am clearly sat at home writing this. For months I have been looking forward to visiting a new country, experiencing its wildlife and culture and generally getting some winter sun. Hence, I was deeply disappointed when The Gambia hit national news a few weeks ago when the former Prime Minister refused to step down and military action was being threatened. At the time I felt a little selfish that my main concern was worrying about whether or not my holiday would be cancelled and whether or not I would receive a refund when hundreds of people were fleeing their homes in fear that a war would break out in their country.
Traveleyes were prompt at releasing a statement regarding the trip when the news first broke and assured us that our safety was their main priority. The holiday wasn’t cancelled immediately. Despite the Foreign Office declaring it is now safe to travel to The Gambia, Traveleyes were advised by their suppliers to cancel. This was only last week and already we have a full refund, which softens the blow a little.
I was hoping to blog about travelling with a company like Traveleyes, but it looks like it will have to wait for another day. If you would like more information about Traveleyes, you can visit their website here.
Traveleyes have been on my radar for some time. I have been lucky enough to travel to lots of countries over the years, but when I holiday with my family we rarely go on organised excursions opting instead to stay around the hotel or self-explore. This has always been fine and something I plan on continuing to do. However, I also want to experience the world in a more adventurous manner. So last year when I saw Traveleyes release their holiday to The Gambia and one of the tour highlights was seeing monkeys in the wild (my favourite animal), I was immediately interested.
The thought process had to be quite quick since Traveleyes always emphasise how popular their holidays are at the bottom of their promotional emails and I know through word of mouth that places get snapped up pretty fast. So, within less than 24hrs of the trip being advertised, I decided that I definitely wanted to go and to my surprise my family were keen to come too, making us two sighted and two visually impaired travellers. It was the weekend so I registered our interest through the website and found out on the Monday that the trip was already fully booked, but we would be placed on a waiting list. I honestly couldn’t believe at just how speedily the places did go. The following week we were informed that they had increased the number of places available due to popular demand and we could now go. A deposit was paid with the full balance due 12 weeks prior to our departure date.
Right now, I should be boarding the plane to The Gambia. Only I am clearly sat at home writing this. For months I have been looking forward to visiting a new country, experiencing its wildlife and culture and generally getting some winter sun. Hence, I was deeply disappointed when The Gambia hit national news a few weeks ago when the former Prime Minister refused to step down and military action was being threatened. At the time I felt a little selfish that my main concern was worrying about whether or not my holiday would be cancelled and whether or not I would receive a refund when hundreds of people were fleeing their homes in fear that a war would break out in their country.
Traveleyes were prompt at releasing a statement regarding the trip when the news first broke and assured us that our safety was their main priority. The holiday wasn’t cancelled immediately. Despite the Foreign Office declaring it is now safe to travel to The Gambia, Traveleyes were advised by their suppliers to cancel. This was only last week and already we have a full refund, which softens the blow a little.
I was hoping to blog about travelling with a company like Traveleyes, but it looks like it will have to wait for another day. If you would like more information about Traveleyes, you can visit their website here.
Tuesday, 15 November 2016
Fitbit
I got a Fitbit Charge HR for my birthday, which means I’ve had it for about four months now. I requested that model as it was the cheapest Fitbit without a screen that measured your heart-rate. Whilst I like the sound of the more expensive models, Fitbit Blaze and Fitbit Surge, it would have been pointless getting one since the interfaces would not be accessible to me and I would therefore be unable to take advantage of the extra features. I did consider asking my parents for an Apple watch instead, which has the Voice Over screen reader inbuilt meaning I could access the watch to its full potential, but the price was too steep. My Fitbit Charge HR cost £100 and I’m very happy with its capabilities.
I say my Fitbit doesn’t have a screen, but in fact it does, just not one you can interact with. There is a button on the side of the watch and each time you press it, it displays different information, including the time, the amount of steps I’ve done that day and my current heart-rate. None of this information is accessible to me.
Setting up the Fitbit is also an inaccessible process, as you need to type in the code displayed on the screen in order to synchronise it to your smart device. However, once you are set-up there are tons of statistics at your finger-tips.
The App
The app itself is generally accessible. I am able to view the majority of information available with ease. The only feature on the app that isn’t accessible are the graphs that show progression or a lack of. This isn’t important, as Fitbit emails a weekly report and you are also able to view a breakdown of figures in number form in the app. When the battery level is low, Fitbit will again send an email to notify you, but this is visible in the app too. The battery lasts four or five days on average and takes about two hours to charge fully.
Steps
The daily recommended average is ten thousand per day and surprisingly, I find it quite difficult to reach the target on non-track days. I like trying to meet the goal and I still get a tingle of excitement when my Fitbit vibrates to inform me that I’ve managed it. Since having the Fitbit it has encouraged me to be more active.
Floors
The recommended amount is ten flights per day. This isn’t difficult to reach. I find the badge rewards quite fun, telling me things like I’ve climbed the height of a hot air balloon or I’ve walked the same distance as a marathon.
Sleep
This is one of my favourite features. Every morning the first thing I check is how much sleep I got the night before. It lets you know how long you slept, how many times you woke up and how many times you were restless. I have learnt that I require at least eight and a half to nine hours sleep per night to be fully functioning the following day. It is a miracle if I sleep straight through and I appear to be quite a restless sleeper, which I put down to dreaming nearly every night.
Heart-Rate
Ok so this is another feature I love. At the moment my resting heart-rate is sixty-seven beats per minute, which is fairly rubbish for a so-called athlete. Embarrassingly, when I first got my Fitbit it was seventy beats per minute and it has only recently started to decline. However, it proves that winter training is working and I’m getting fitter. To further prove this theory, I have been able to see my average heart rate on the long runs I have been forced to endure, as it automatically recognises and logs when I’ve gone for a run, walk or exercised. When I first started my long runs my average heart rate was over one-hundred and sixty beats per minute. After a couple of weeks that decreased to one-hundred and thirty beats per minute. The heart-rate feature is also good to track and prevent illness. One morning I noticed my resting heart-rate had spiked from the previous day warning me that my body was working harder than usual, possibly fighting off an internal infection. I did feel sluggish that day and ensured I didn’t exert myself unnecessarily. After a couple of days my heart-rate returned to its usual status and I felt back to normal.
Other
A useful feature on the Fitbit is that it vibrates when my phone is ringing. This is quite good when I’m out and about and my phone is in my pocket or handbag and I can’t hear it. You are also able to entre in manually your weight, water in-take and calories eaten. I don’t really bother with this stuff. For a bit of fun, if you have friends who have a Fitbit you can challenge them to see who can do the most steps in a week or other games. There are probably more features that I have yet to discover too. Personally, I find it all fascinating and definitely recommend purchasing a Fitbit Charge HR if you either want to get fitter or monitor your fitness.
I say my Fitbit doesn’t have a screen, but in fact it does, just not one you can interact with. There is a button on the side of the watch and each time you press it, it displays different information, including the time, the amount of steps I’ve done that day and my current heart-rate. None of this information is accessible to me.
Setting up the Fitbit is also an inaccessible process, as you need to type in the code displayed on the screen in order to synchronise it to your smart device. However, once you are set-up there are tons of statistics at your finger-tips.
The App
The app itself is generally accessible. I am able to view the majority of information available with ease. The only feature on the app that isn’t accessible are the graphs that show progression or a lack of. This isn’t important, as Fitbit emails a weekly report and you are also able to view a breakdown of figures in number form in the app. When the battery level is low, Fitbit will again send an email to notify you, but this is visible in the app too. The battery lasts four or five days on average and takes about two hours to charge fully.
Steps
The daily recommended average is ten thousand per day and surprisingly, I find it quite difficult to reach the target on non-track days. I like trying to meet the goal and I still get a tingle of excitement when my Fitbit vibrates to inform me that I’ve managed it. Since having the Fitbit it has encouraged me to be more active.
Floors
The recommended amount is ten flights per day. This isn’t difficult to reach. I find the badge rewards quite fun, telling me things like I’ve climbed the height of a hot air balloon or I’ve walked the same distance as a marathon.
Sleep
This is one of my favourite features. Every morning the first thing I check is how much sleep I got the night before. It lets you know how long you slept, how many times you woke up and how many times you were restless. I have learnt that I require at least eight and a half to nine hours sleep per night to be fully functioning the following day. It is a miracle if I sleep straight through and I appear to be quite a restless sleeper, which I put down to dreaming nearly every night.
Heart-Rate
Ok so this is another feature I love. At the moment my resting heart-rate is sixty-seven beats per minute, which is fairly rubbish for a so-called athlete. Embarrassingly, when I first got my Fitbit it was seventy beats per minute and it has only recently started to decline. However, it proves that winter training is working and I’m getting fitter. To further prove this theory, I have been able to see my average heart rate on the long runs I have been forced to endure, as it automatically recognises and logs when I’ve gone for a run, walk or exercised. When I first started my long runs my average heart rate was over one-hundred and sixty beats per minute. After a couple of weeks that decreased to one-hundred and thirty beats per minute. The heart-rate feature is also good to track and prevent illness. One morning I noticed my resting heart-rate had spiked from the previous day warning me that my body was working harder than usual, possibly fighting off an internal infection. I did feel sluggish that day and ensured I didn’t exert myself unnecessarily. After a couple of days my heart-rate returned to its usual status and I felt back to normal.
Other
A useful feature on the Fitbit is that it vibrates when my phone is ringing. This is quite good when I’m out and about and my phone is in my pocket or handbag and I can’t hear it. You are also able to entre in manually your weight, water in-take and calories eaten. I don’t really bother with this stuff. For a bit of fun, if you have friends who have a Fitbit you can challenge them to see who can do the most steps in a week or other games. There are probably more features that I have yet to discover too. Personally, I find it all fascinating and definitely recommend purchasing a Fitbit Charge HR if you either want to get fitter or monitor your fitness.
Monday, 14 November 2016
Online Dating
In this day and age, if you are single, people’s default response is to urge you to go online. It’s nothing to be ashamed of, everyone does it and it actually works! For some people that is. I myself have two friends who met their respective fiancé’s online and another friend who is about to move in with their partner who they also met online. But what is online dating like for someone like me? Well, in a nutshell an unpleasant experience that I won’t be in a hurry to repeat.
I spent six months on popular dating website Plenty of Fish or for those in the know POF. I chose it for a variety of reasons, firstly it was free, secondly one of my best friend’s had a very positive experience and thirdly the site is pretty accessible for a screen reader user. The app is also ok, but not as good as the main site on a desktop computer.
In six months of being online, I managed to go on let me just count them up, zero dates. There were a couple of males who suggested going out ‘some time’, but then they would simply vanish from the face of the earth one day. This was a common theme. You will have a conversation with someone for a week or so, then they just stop speaking to you for no apparent reason. The irritating thing is that you can see when they are online and blatantly blanking you. It seems to be acceptable to be rude online.
A good feature on POF is the block button. This was used frequently to block guys who were just after one thing and had no shame in asking up front. This made me question whether ‘honesty’ was really an admirable characteristic or not.
I’m not sure if my downfall was my profile. Do you drink? No. Do you smoke? No. Do you drive? No. Do you have children? No. What is your religion? Muslim. This is all before I reveal I have a disability. I chose not to state I was visually impaired in my profile. However, I did give little hints, such as ‘I enjoy walking my Guide Dog’ and had a picture of me with Calvin. I’m lucky that in photos I can hide my blindness. Generally, most people didn’t read your profile and messaged you based on your profile photo. For me this meant I received lots of messages from Asian men, which is fine, but when you’ve grown-up in a predominantly white area and your cousins call you a coconut (brown on the outside, white on the in) it means you struggle to connect with the majority of Asian males. Tecnically, I’m not even Asian as my Mum is from Mauritius and my Dad is from Kenya. Geographically that makes me African.
I tried to be open minded when talking to people and reading their profiles. Obviously, I couldn’t see their profile pictures, but POF tells you their hair, eye and skin colour, as well as their height and age. This enables you to create some sort of image in your head for evaluation. I wish it told me attributes like facial hair, piercings and tattoos, but you can’t have everything.
I spoke to hundreds of males online. Some messaged me first, others I messaged first. I was very careful, which was another thing that went against me. When people asked for my number I politely told them that I would prefer to keep chatting via POF until I got to know them better. Lots of guys didn’t like this and would move on to their next victim. My friends and family all knew I was online and if I did go on a date it was agreed that someone would be watching nearby. At the end of the day, I am a vulnerable individual no matter how independent I try to be.
Overall, online dating left me feeling deflated and undesirable. Therefore, I deleted my account and plan to explore other avenues in my quest for love. I’m glad I tried it and it is great that it works for some people, it just wasn’t designed for someone as unique as me. If you do try online dating, please stay safe.
I spent six months on popular dating website Plenty of Fish or for those in the know POF. I chose it for a variety of reasons, firstly it was free, secondly one of my best friend’s had a very positive experience and thirdly the site is pretty accessible for a screen reader user. The app is also ok, but not as good as the main site on a desktop computer.
In six months of being online, I managed to go on let me just count them up, zero dates. There were a couple of males who suggested going out ‘some time’, but then they would simply vanish from the face of the earth one day. This was a common theme. You will have a conversation with someone for a week or so, then they just stop speaking to you for no apparent reason. The irritating thing is that you can see when they are online and blatantly blanking you. It seems to be acceptable to be rude online.
A good feature on POF is the block button. This was used frequently to block guys who were just after one thing and had no shame in asking up front. This made me question whether ‘honesty’ was really an admirable characteristic or not.
I’m not sure if my downfall was my profile. Do you drink? No. Do you smoke? No. Do you drive? No. Do you have children? No. What is your religion? Muslim. This is all before I reveal I have a disability. I chose not to state I was visually impaired in my profile. However, I did give little hints, such as ‘I enjoy walking my Guide Dog’ and had a picture of me with Calvin. I’m lucky that in photos I can hide my blindness. Generally, most people didn’t read your profile and messaged you based on your profile photo. For me this meant I received lots of messages from Asian men, which is fine, but when you’ve grown-up in a predominantly white area and your cousins call you a coconut (brown on the outside, white on the in) it means you struggle to connect with the majority of Asian males. Tecnically, I’m not even Asian as my Mum is from Mauritius and my Dad is from Kenya. Geographically that makes me African.
I tried to be open minded when talking to people and reading their profiles. Obviously, I couldn’t see their profile pictures, but POF tells you their hair, eye and skin colour, as well as their height and age. This enables you to create some sort of image in your head for evaluation. I wish it told me attributes like facial hair, piercings and tattoos, but you can’t have everything.
I spoke to hundreds of males online. Some messaged me first, others I messaged first. I was very careful, which was another thing that went against me. When people asked for my number I politely told them that I would prefer to keep chatting via POF until I got to know them better. Lots of guys didn’t like this and would move on to their next victim. My friends and family all knew I was online and if I did go on a date it was agreed that someone would be watching nearby. At the end of the day, I am a vulnerable individual no matter how independent I try to be.
Overall, online dating left me feeling deflated and undesirable. Therefore, I deleted my account and plan to explore other avenues in my quest for love. I’m glad I tried it and it is great that it works for some people, it just wasn’t designed for someone as unique as me. If you do try online dating, please stay safe.
Friday, 19 August 2016
TPT Guest Blog
Recently, I was asked to guest blog for Thomas Pocklington Trust. I wrote about how athletics has helped me deal with my sight loss in the hope that it encourages other visually impaired people to get involved in sport. You can read my post by clicking here.
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