You wake up, get ready for the day, go to work, to the shops, pub, gym. But can you imagine doing these things knowing that you are losing your sight? Or waking up one day and your sight completely gone? According to Fight for Sight a leading UK eye charity 78% of people fear losing their sight.
But this is what Colin Bowley’s life was like before he lost his sight.
Photo from Facebook
Colin Bowley, 60, lives in Broxbourne on the border between Essex and Hertfordshire. He used to work as a Financial Journalist in London, he has two children and two grandchildren. He had a busy and enjoyable life both in and out of work; but it was always marred by the knowledge that he was going to lose his sight, something which at the time would have turned his world upside down.
Colin has Retinitis Pigmentosa (RP) which runs in his family. This condition is the most common inherited eye condition affecting 1 in 4,000 people. RP affects the light-sensitive tissues in the back of the eye causing them to breakdown slowly overtime. He also suffers from Glaucoma happens when the optic nerve gets damaged which leads to a build-up of fluid in the front part of the eye increasing the pressure inside the eye. Colin’s Glaucoma wasn’t diagnosed as early as it could have been diagnosed sooner, but due his RP he was unable to notice the difference in vision the Glaucoma caused.
A video showing a simulation of what retinitis pigmentosa could look like compared to normal vision
In 2008, Colin had to stop working. “I felt like my world was closing down on me and I became very depressed.” When he was outside he found it embarrassing which added to his depression, so he began staying inside more and more. At one point he would even refuse to go out even with assistance, “as my sight deteriorated so did my confidence.” With help from family and friends, Colin decided to take their advice and put his life “back together again”. He contacted the local council and within a few weeks he was having lessons on how to use a long white cane.
“Using the long cane was extremely difficult and I was having real trouble with it physically and mentally as I had to constantly concentrate on memorising the route and look out for landmarks so I would know where I was. Any distraction sent me in a spin and made the experience unpleasant.”
Shortly after starting long cane training, Colin was advised to contact Guide Dogs for The Blind to enquire about the possibility of getting a guide dog, so he did.
Photo taken by Ann Danhaive Bowley
In March 2017, Colin was matched with guide dog Arthur.
Photo taken by Sara Burrell of Arthur’s first day Photo taken by Sara Burrell of Arthur’s first day Photo taken by Sara Burrell of Arthur’s Final walk out
Arthur was born in 11th June 2015. In just under two years he learnt how to be a guide dog from avoiding obstacles all the way to finding seats.
Photo taken by Ann Danhaive BowleyPhoto taken by Ann Danhaive BowleyPhoto taken by Ann Danhaive BowleyPhoto taken by Ann Danhaive Bowley
“My life changed dramatically once we qualified”. Colin not only got Arthur, but he got his confidence back. He was able to go to places he hadn’t been to for a few years, and he started to socialise with his friends again as well as meeting new friends which encouraged him to go further afield.
Video taken by Ann Danhaive Bowley
Since then, Colin has skydived, abseiled down spinnaker tower, walked over the top of the O2, walked 60 kilometres from Eastbourne to Hove and gone on Europe’s longest zip line in North Wales. He also started volunteering at guide dogs as a fundraiser and soon become fundraising co-ordinator for his Broxbourne.
Photo by Aidan Chaffe from Facebook Photo taken by Ann Danhaive BowleyPhoto taken by Ann Danhaive BowleyPhoto from a Guide Dog article
Unfortunately, Arthur was diagnosed with cancer meaning he has been forced to retire as a guide dog. Colin was a bit hesitant to go back on the list for a guide dog as he didn’t want to “replace” him, but Colin “quickly realised that he [Arthur] wouldn’t want me to go back to my old, depressed life and waste the independence he has gifted me.”
Colin wishes that there was more public awareness of all disabilities, education and accessibility, especially as a small adaption can make a world of difference. He also would like more funding to go into medical and technological research.
With hindsight Colin would tell himself to reach out sooner while he still had sight instead of living in denial. If he could give other visually impaired people advice he would say “I understand how fearful you must be but reach out to friends, family and charities that support the visually impaired. Although life will never be the same again, there is life out there and it can be a good one.”
I have lived with Aniridia since birth; and no matter how many ‘specialised’ doctors you see or how many other people with visual impairments you meet, you still feel isolated, different, and misunderstood. Now I don’t speak for everyone when I say that this is the exact reason Aniridia Network is important.
So, when I received an email invite to an in-person conference on the 2nd of September in Birmingham; I jumped at the chance to attend.
When I was booking my place, I noticed that it started early in the morning, so I decided to book to stay at a Premier Inn from Friday 1st to Sunday 3rd September, allowing me to make the most of this opportunity. Something I was also grateful for when train companies announced a strike on the 2nd.
There was a mixture of emotions leading up to the conference, excitement, fear, apprehension. I was excited to be able to engage with other people similar to me but at the same time I was scared of meeting these people because what if they didn’t accept me? What if I came away regretting going? All sorts of what ifs and doubts plagued me. Looking back all of the fear and worrying was unnecessary but hindsight is a wonderful thing.
Remember how I said I booked to go up the day before because it would be easier and there was a train strike on the 2nd? Well, that train strike was extended to cover the 1st and 2nd. Which wasn’t great especially as at the time I happened to be over in America. This added to the stress of the event slightly but thankfully I still managed to make it up to Birmingham with the help of family.
The amount of information provided by the Network to help people was amazing from attaching an agenda of the day all the way to giving instruction on how to get to the venue in a variety of ways from walking all the way to bus and tram information. I have never been to an event where that much thought and detail was giving to help attendees. This helped ease my fear slightly and made me feel safer knowing that at any time I could check and re check the information as much as I liked without bothering anybody.
Finally, the day arrived, ironically, I think I was more nervous in the lead up than I was on the actual day. I arrived at the Library of Birmingham at about 9:25am and found a seat at a table. Now admittedly at the start of the day I didn’t really talk to people because I was still a bit scared but that soon changed.
We started out the day with a talk from Helen Campbell who is a MSC genetic engineering counselling student at Cardiff university. Helen was looking at the experience of people with sporadic and familial Aniridia and those experiencing further sight loss and the psychosocial impact this has. I found this talk particularly interesting as it is something I myself have experienced and gave me hope for the future and how Aniridia and sight loss will be viewed and treated.
The next speaker was Emily Nash who was talking about the improvements that needed to be made to public transport. This again was a talk that really connected with as someone who travels regularly and has often been let down by the current system that is in place.
There were also talks from Vivienne Kit and Dulce de Lima Cunha from Moorfields Eye Hospital who were talking about research into Aniridia, Bernie and Abbie Reddington who were talking about Auditory processing disorder.
This was followed by lunch which got a bit chaotic (though it wasn’t anyones fault) because although we were told what was available it was a buffet lunch which I personally struggle with (mostly due to the amount of people trying to get food at once). Even when I know what is available I still wasn’t sure where what I wanted was. During this break I spoke to other people who were attending on a variety of things; from just getting to know them to talking about hospital experiences and what needs to be changed.
Emily Sterling also from Cardiff university talked about knowing that you’re not alone and the use of the internet in Aniridia patients. I found this talk interesting; finding out about the different themes found when looking at this such as transformational and empowerment. Many of the quotes given about this topic were also very relatable; this one quote in particular resonated with me, “in my teen years it was hard to accept my visual impairment”. Considering this talk was about knowing you’re not alone I would say it was very successful; even hearing the research and quotes made me feel less alone.
Following this we had talks from trustees and patrons as well as Permjit Bhachu from Focus Birmingham.
The conference was then ended, and many people joined the social at the Rep bar where drinks and conversation flowed before some of us went for dinner at the Novetel Gourmet Bar. Again, here food, drink and conversation continued.
Overall, I thoroughly enjoyed my time at conference and as soon as I got talking to people all of my fear and apprehension disappeared. I would definitely recommend attending a conference to others; not only can you engage with research you get to know other people and everything you have ever felt isolated, different, misunderstood, all seems to fade away just for a while.
At the end i also managed to pick up a few books and leaflets to try and help me explain Aniridia and how it affects me to those around me.
I personally will definitely be attending more events that are put on by Aniridia network, whether that be a meet up or a conference.
If you are considering attending an Aniridia network event I would recommend attending even if you only go for a short time. The feeling of being around other people with Aniridias one that cannot be replicated easily.
Recently I visited Colchester Castle; as someone who is interested in history this is probably one of the best places to go to experience history. Admittedly as someone who lives in Essex I have probably failed massively as I have never actually been to Colchester castle before meaning this was an entirely new experience for me.
Before I visit anywhere I tend to check what the accessibility is like. On the website Colchester castle seems to be one of the best places for accessibility in general from having subtitles on videos and hearing loops for those with hearing impairments to having quieter times and ear defenders available for those with sensory issues such as autism.
A video of me navigating the Colchester Castle Website using my screen reader
For me personally, I was interested in what accommodations were in place for visually impaired guests. The fact my screen reader worked with the website was my first green flag. According to the website their were audio described tours and object handling sessions which would be available on the day, braille on many exhibits and interactive tablets with some accessibility.
Now if you have read my article about the London Mithraeum you will know that similar accessibility was laid on their website but wasn’t necessarily available at the Mithraeum. The case was very similar at Colchester Castle.
When i arrived at the Castle I asked the staff on the front desk about audio described tours I was meet with silence. When i stated that the website said you could get an audio described tour by asking on arrival the staff responded by checking the website and then telling me (in a very rude tone i might add) that they didn’t do audio described tours and that if i wanted one I should have booked
Turning up and receiving assistance is something disabled people should have; the fact the website clearly stated that you were allowed to turn up and ask without booking gives a disabled person hope that this place is more accepting when in actual fact they aren’t.
Following on from this is was also told that the audio described handheld devices were unavailable because the museum had changed its layout. If your changing the layout of the museum and know you have handheld audio devices then you should update them either after you change the layout or as you change the layout. By not updating them it alienates disabled people further.
I am unable to tell you what accessibility the interactive tablets have as I am unable to use devices without a screen reader and the interactive tablets only seem to support magnification. However from the website description of the tablets having “some audio clips” seems to suggest they don’t even have magnification. I am in no position to say if this hypothesis is correct.
Moving on to the museum itself I found that there was a significant lack of braille compared to what was advertised on the website. Their only seemed to be braille on the replicas displayed. Meaning I was unable to truly interact with the museum and couldn’t actually follow the timeline laid out.
Whilst my nan tried to describe the items she doesn’t know everything about the items and at times struggled to find the item on display. When it came the the replicas the descriptions given were shockingly unclear say the the statue is in “bright colours” means absolutely nothing to me as a blind person, are they in red? Blue? Green? Pink? Give more more than just “bright colours” as the description.
The other problem I found with the braille was that it was either blocked by the exhibit, too low down, rubbed of and even blocked by sellotape in some cases.
I also found that the braille on the exhibit with different pots (which is shown in the picture above) that the braille on the plaques was somewhat misleading. In my mind if I am reading something I think it is what is directly in front of me. for this exhibit the plaque was talking about the replica to the right of the plaque however there was nothing to tell me as a blind person that I needed to feel to my right I had to be told by my nan.
This highlights that the braille needs updating and that the Castle needs to think about where they place the braille. For example the braille that was near to the floor was completely inaccessible to me due to the fact I have other disabilities which make it hard for me to bend that far down.
They also need to update the information on audio description tours and their handheld guides because not all Visually Impaired people can read braille.
As we were going round my nan told me that by the side of each exhibit case there were some information cards which got me thinking that really all the Castle would need Is a descriptive braille version of these cards which could be placed at each exhibit much like the print versions. This would mean I would be able to follow the timeline of the museum independently.
She also pointed out that there was a large print book in the gladiator exhibit. However she then pointed out that the print wasn’t that large in comparison to what a visually impaired person might need to be able to use these books.
The other thing I found was that the tactile maps were at the very end of the exhibit which made them useless to me as I had already been round the floor. It would have been a lot more useful if they were at the start so I would know where everything was.
So what is my opinion on the accessibility at Colchester Castle?
Personally I felt that Colchester Castle wasn’t as accessible as it portrays itself. I am saying this from the perspective of a blind person but there was a significant lack of access for someone who is blind. Even with the lifts you had to stand in the middle or it wouldn’t move this is something you might mot necessarily be able to navigate as a wheelchair user and is something I struggled gaging if I was in the middle or not. I think that there does need to be some thought put into how braille is placed and improving the braille throughout the museum. It also goes without saying that the audio devices need to be updated.
I do think this is a good trip out especially if you like history; but I did find myself become disengaged with the museum due to the lack of access.
What would I suggest to help the Museum?
1. Either create a braille version of the information cards or have a booklet that is available at the front desk.
2. Adding more description into the descriptions “bright colour” means nothing to me as a blind person; however, “the man is wearing a bright yellow cloth” or even “bright yellow like the sun” means a lot more to me
3 have your tactile maps in a open place at the beginning of the floor not at the end of the exhibit because then it is of no use to me
4 when you update your museum update your audio guides and/or make it that you can provide audio tour if your audio guides don’t work. it is also worth saying audio tours should NOT be reliant on staffing you should be able to conduct them no matter who you are.
5 when doing large print books it is good to have multiple sizes, every visual impaired person is different meaning what size they can read will differ this could be as low as 18 or as high as 48. Try and get a range of large print sizes.
Obviously I can’t speak for every disability but i would be intrigued to see if it was a difference experience for someone who is deaf or has a wheelchair.
August is known for being the height of summer often refereed to as the ‘dog days of summer’ due to the star sign Sirius which would appear in the sky.
August also happens to be children’s eye health awareness month. This is primarily celebrated in the US to try and prevent blindness and raise more awareness about taking care of children’s eyes.
Statistics suggest the 1 in 20 children between 3 and 5 have serious eye problems. These problems could lead to permanent vision loss later in life. That is why it is very important for parents to keep up with their child’s eye examinations. This is even more important for children as a lot of there learning is done visually, helping them to develop physically and intellectually.
Common symptoms relating to eye problems are: rubbing eyes, squinting, tilting/turning head, eyes wandering or squeezing eyes. These can be linked to the most common eye problems in child which are: Myopia (nearsightedness) hyperopia (farsightedness) and astigmatism.
There are more serious eye conditions such as amblyopia (lazy eye) , strabismus (crossed eyes), ptosis (dropping of the eye lid) or even colour deficiencies.
You can celebrate eye health awareness month by:
1. Schedule an eye examination for your child
2 Recognise the month on social media by using #ChildrenEyeAndSafetyMonth and sharing information.
3 Attend a presentation on the importance of eye health
As someone one was born with several different eye conditions I can strongly suggest getting your children’s eyes regularly checked if you can.
Deaf-blindness is defined as having both your hearing and sight impaired.
Deafblind UK helps people who are deafblind to live with their condition and to build their confidence and independence. They offer comfort, understanding and advice as well as practical support, residential support, care and social opportunities.
I can only imagine what that must be like to be Deaf-Blind, so in the interest of educating myself further and hopefully educating some other people I thought I would interview one of my friend Evie about her experience.
I had already learnt a few things from Evie and interviewed her a few times for a school podcast. However, this time I thought we would try and delve deeper into the condition and how it affects people’s day to day living.
Podcast episode that i recorded with Evie last year.
Evie is a Judo player who is currently on the GB Paralympic team, she is currently studying sports massage at college as well as working towards her black belt in Judo. She is hoping to get to the Paralympics by 2028. You can find Evie’s judo journey on instagram.
A picture of Evie taking part in a Judo competition
Q: What is the reason you are Deaf-Blind?
A: The doctors diagnosed me with ramos-arroyo syndrome which affects the eyes anaesthetic corneas, optic nerve, hypoplasia and sensorineural deafness. It is a very rare syndrome and has only been reported 5 times since 2008.
Q: When did you or your family start noticing you were Deaf-Blind?
A: I was 4 months old when my family found I had a visual impairment as my eyes got infected. My parents noticed I wasn’t hearing things properly as I was a very active child but I wasn’t talking the way other children did, which is when my family found out I was going deaf.
A picture of a young Evie facing away from the camera with a plait in her hair . We can see she is wearing a hearing air in her ear.
At 4 I started using hearing aids which I really didn’t like as I didn’t understand why I had to wear them. But after a while I started to get used to them and started to like them more.
Q: What has your Deaf-Blind journey been like?
A: My hearing and vision has always been deteriorating little by little but when I was 16 I made the decision to go to a blind sixth form to improve my skills.
A picture of Evie at the 6th form leavers dinner in June 2022.
This is where my deterioration really started as I was losing more and more vision and hearing. I had been offered cochlear implants a few times before but I had turned it down as I didn’t want it to affect my judo journey. But I then found out that it wouldn’t affect my judo. This made me very happy as Judo is my life.
A picture of Evie in her Judo GI wearing a green beltZ Evie after having cochlear implant surgery
Last August I had my cochlear implant operation and was ‘turned on’ only two weeks after that. It was shocking my first thought was wow. But it wasn’t able to instantly hear everything as I had to re-learn how to hear everything. It is a very long process and even now I am still learning sounds both old and new.
A video of Evie at the Audiologist after having Cochlear implant surgery.
I am now starting to get back to my judo training and I met this lovely lady who was also deaf with cochlear implants. She had done judo competitively and showed my how to take care of my implants in training and competitions.
Evie now with cochlear implants at a Judo session
Q: What did you do whilst growing up to help you develop different skills and have different experience?
A: I did a lot of different activities as a kid to help me develop different skills and have different experiences. I did Ballet, swimming, rock climbing, going away with the deaf community and judo which is what most people know me for.
A photo of Evie Rock Climbing A photo of Evie with a white horseA phot of a young evie at a play group Young Evie petting an animal on a persons lap A phot of Evie in a ballet outfit holding a certificate A photo of Evie after running a raceA photo of Evie doing archery A photo of Evie on a bumper car ride A photo of Evie getting fitted with a harness A photo of Evie about to zip line A group of pictures displaying Evie doing different activities
I also went away with the deaf community. I was part of this amazing community with young people who also have some sort hearing impairments or deafness. They set up holidays for us to learn different skills and help us build confidence and grow as people together. We did all kinds of different activities such as; hiking, sports, games, arts and craft, boat sailing, speed boat riding, archery, building campfires and dens. But most importantly making friends and learning about each other and how we could help one another. These events helped to improve my confidence and all of the different skills I had as well as teaching me new ones.
Q: How do you do tasks independently if you are deaf-blind?
A: I can do anything that anyone else can I just have to adapt everything to suit me.
Evie at a touch tour if a show production
When I am out I currently use a long white cane which has red stripes on which lets people know I am deaf as well as blind.
Evie walking with her red and white cane
When I travel on the train I book assistance to help guiding me on and off the train and finding a seat. I use the Trainline app to track my journey so I know which stop is next as I can’t hear the announcements. On buses I use the moveit app which means I can track my stops.
Evie being guided by passenger assistance on to a train
I have been learning different routes with my mobility instructor to help me get confident navigating to my regular places such as the shops or the train station. When crossing the road I try find tactile payments or a quiet spot. I use pelican crossing so i can rely on the spinning cone to know when it safe to cross as I can’t hear the beeping sound. Crossing a road is very difficult if people block the pelican crossing as it means i then can’t find the spinning cone.
I can live independently by having adapted equipment like a one cup kettle, using an electric hob instead of gas, having a doorbell system, vibrating fire alarm, Braille labelled medication and different technologies.
There are so many adaptations to equipment out there now for all disabled people to live independently as much as possible.
Q: Will you be getting an assistance dog?
A: Yes I am planning on getting a guide dog. I’m currently in the process of getting one to help me travel around independently and safely. Because of my Deafness the dog would hopefully be trained to alert me when a fire alarm is going off and alert to door knocking as well as being able to guide me.
I have previously had a buddy dog. Buddy dogs are a service run by Guide dogs which is aimed to help give children more confidence, build relationships and help gain trust. Buddy dogs can also help with wellbeing and family too.
A young Evie with Uma a black Labrador who us wearing a buddy dog jacket with the guide dog logo on
My parents decided to get me a buddy dog when I was 10 because they knew it would give me more independence, help me become responsible and prepare me for getting a guide dog.
I was one of the first few people to get a buddy dog as the scheme was very new. My buddy dog is called Uma and she has been there for me from the toughest days to the best days. Una has helped me build confidence, get outside, meet new people and learn new skills. She has come everywhere with me from libraries to beaches, on holiday, on planes and on trains. Anywhere you can think if Uma has probably been there with me.
A picture of black Labrador Uma sat by the beach
Me and Uma meet up and filmed an advert for guide dogs a few years ago to raise more awareness for the buddy dog scheme. The advert can be found on YouTube and shows the kind of relationship me and Uma have.
Uma a black Labrador say in the boot if a car with three pumpkins A picture of a young Evie her buddy dog Uma a black Labrador by the beachA picture of young Evie with her buddy dog Uma on Uma 3rd birthdayA young Evie dressed in an elf costume on a train with her buddy dog Uma wearing a Christmas jumperA young Evie is painting Uma toe nailsEvie and Uma at a train station Evie with Uma boarding a train with the help of passenger assistance
Uma is my best friend. She has helped me through so much and she probably doesn’t even know how much she has helped me.
Q: How do you do Judo if you are deaf-blind?
A: Like I said earlier I have done a lot of sports over the years, I have been doing Judo for 7 years now and I am currently a brown belt. I compete in high level Judo competitions and I am also on the paralipomena pathway for visually impaired Judo fighters. I have done really amazing judoka coaches and fighters.
A picture of evie about to fight.
I communicate with my coaches so they know the best way of supporting me. I learn by feeling the technique and positioning that is being taught as when i am fighting i take my cochlear implant out. This is the same when I compete in competition as i am guided by the referee and I then ‘grip up’ with my competitor. When I compete the referee will tap me once and to stop the fight they tap me twice. The score is then signed on to my hand before I am guided back off the mats.
Q: What are you hoping to do when you leave college?
A: When I leave college I am hoping to s carry on with my competitive Judo training and start training full time. Which would hopefully mean i get to travel internationally with the VI Great British team. If that doesn’t work out or when I finish my judo career I am hoping to tart up my own massage business and become self-employed.
Q: What do you struggle with about being deaf-blind?
A: I struggle a lot with communication; as I can’t always hear people’s voices especially if they are higher in pitch, I can’t read lips because of my Blindness and I have to use hands on hands signing which not a lot of people know.
A photo from Sense showing two people doing hands on hands signing.
Q: Can you explain how you learnt hands on hands signing?
A: I started learning sign language when I was very young. When I started I still had some useful vision, because I still had useful vision when I just learnt normal sign language as I could see sign close up.
I did stop learning for a few years and by the time i took sign language back up I had lost more hearing and aight. This meant that I had to re-learn sign language but adapt it to deaf-blind sign language or as it is more commonly known hands on hands signing. I started learning hands on hands signing when I was in secondary school; I would have a support teacher come in and teach me how to communicate in an accessible way by allowing me to feel the signs by holding their hands.
Q: How might someone learn hands on hands signing?
A video from the Sense Charity youtube channel on deafblind signing
There is a deaf-blind sign language course you can take which you can find on the internet by different companies such as signature and sign for thought. Although the best way to learn hands on hands Sign Language is from a deaf-blind person as they know best what works for them deaf-blind people are happy to help so just feel free to ask us.
Q: Do you prefer cochlear implants to hearing aids?
A: Yes I do prefer having cochlear implants over my hearing aids; because it’s better technology and has improved my hearing a bit more. It is just lot easier now communication wise. There is nothing that doctors can do to help my vision; so at least they can help by bringing some of my hearing back to make my day to day life easier.
Q: What is some advice you want to give someone who is considered cochlear implant surgery?
A: Don’t be afraid to stand out wearing them, be proud. Ask lots of questions before the surgery and consider all the pros and cons as there us no turning back. If it is possible try and speak with other cochlear implant users before making a decision.
Q: Would you recommend cochlear implants to someone else?
A: I would definitely recommend them, i find that they really do make a difference.
Q: What are some sounds you can now hear that you love?
A: The sounds that I have really been enjoying recently (because of the very hot weather) is thunderstorms because I’ve never been able to hear them before it has been an entirely new experience. I have also really been enjoy the sound of the birds singing when I go out for a walk as again I have never been able to hear these before.
Q: What are some sounds you don’t like?
A: The sound I really don’t like hearing now is the sound of small dogs barking as it is a very high pitched bark.
Q: What are some myths you want to debunk about deaf-blindness?
A: The top things that I want people to understand about Deaf-blindness are:
Deaf- blind is a spectrum not all deaf-blind people have the same level of hearing or sight. So in my case I’m perfoundly deaf wearing two cochlear implants and I don’t have any useful vision anymore. I’m completely blind in one eye and in the other I can see a very little amount of certain colour and light reflected
Not all deaf-blind people know sign language, I sometimes use tactile BSL it’s slightly different to normal sign language; but it’s basically the same only someone does it hands on hands with me.
Deaf-blind people can use phones and technology. Everyone is different regarding how they use them for example a brallie display connect to a phone or people with hearing devices would use voiceover which they can access over Bluetooth. I can use both ways
Q: What is the best thing about being deaf-blind?
A: The best thing is being able to take my implants out and have a break from hearing.
Q: If you could tell your younger self something what would it be?
A: You’re going to face a lot of defeat but you will get through it.
Q: Would you want to change yourself so you weren’t disabled?
A: This is a very sensitive subject for some people as everyone has different views. For me because I never really knew the world being able to see and hear . I’ve always had to adjust to the world and I’ve learned skills to be able to live in this world. As much I do sometimes struggle it’s does not stop me. I wouldn’t change my disability for anything because it’s not who I am but it a part of me.
Q: What is something you would like to see changed to make society more accessible for you?
A: Make all shop and restaurants staff more knowledgeable and have some basic information and safeguarding put in these places to help deaf -blind people. Things like braille or large print menus, offer sighted guiding around and even offer a quieter table to sit at. Just some basic accessibility things to help more disabled people,
Q: What would you like to come of deaf-blind awareness week?
A: I would love more representation of Deaf-blind people to share their own experiences to help people understand a person who is deaf-blind. I also hope that people will learn not to presume we can hear because we have implants and see because we know the way.
Anything is possible. Just because you can’t hear or see it doesn’t mean we don’t understand. With support, equipment and technology anything is possible to achieve.
There are lots of different communities you can join to learn more about Deaf-Blindness.
Aniridia is an eye condition which primarily affects the iris (the coloured part of the eye): this eye condition also has a whole host of secondary conditions which affect a person. These secondary conditions include conditions such as Nystagmus, Cataract, Photophobia and Glaucoma just to name a few. like a vast majority of conditions and disabilities Aniridia is a spectrum meaning how one person is affected might be completely different to how another person is affected.
A person can either have part of the iris or the full iris affected, this means that a person with Aniridia can not control the amount of light that floods into their eyes in different conditions. This is especially seen when going from extreme conditions such as extreme sunlight into somewhere that is darker. it can take a person a couple of minutes to adjust to new lighting and even then they may still be affected due to what are known as secondary conditions.
The condition is primarily congenital meaning it is a genetic condition and often runs in families although Aniridia can also be acquired but this is very rare. Aniridia is also classed as a ‘rare disease’ due to the low number of people how have the conditions, only around 1% of the world population is affected by Aniridia.
Why is Aniridia day celebrated on June 21st?
June 21st is known as the summer solstice which is the day when the sun is out the longest. June 21st was chosen as International Aniridia day because of the significance the sun plays both in the lives of people with Aniridia and in the summer solstice.
What happens on Aniridia day?
Aniridia day is an ideal time to coordinate events/activities as well as raise more awareness for the condition for both individuals and professionals. Aniridia day can be used to raise funds, recruit volunteers and increase awareness and understanding.
The goal of the day is to improve the lives of those living with Aniridia, strengthen the Aniridia community and support Aniridia associations and networks.
The 2023 campaign for Aniridia day is to encourage those affected by the condition to share the aids they help them in everyday life.
If you would like to read a more about how a person with Aniridia experiences the world you can read my blog post ‘Aniridia: My story’. You can learn more about Aniridia here and can view Aniridia day on Twitter.
My name is Amy i am currently 20 years old and i was born with congenital Aniridia.
Aniridia is an eye condition which affects to iris meaning that i have no colour in my eyes. I also have: Nystagmus, Cataracts, photophobia. Foveal Hyperplasia, Limbal Stem Cell deficiency, Dry eye, and a squint. These conditions are known as secondary conditions as they are in relation to Aniridia which is my main condition.
Like I said at the start, I was born with a genetic condition meaning I have lived all of my like with a majority -I say “majority” due to the fact I was diagnosed with a few of these later in life- of these conditions affected how I lived my life.
A newborn Amy looking towards the camera with big eyes with no iris in
It was fairly easy to let me explore my environment as a child, bayed so,Rome was always in my vicinity if I got myself into anything truly dangerous. Yes I walked into walls, yes I fell over and yes I pulled things down and made a mess of the house. in fairness to me what child doesn’t? For me this was problem solving I was figuring out what was what and being a cheeky toddler at the same time. I had evented my own methods of getting around and doing things. Did this mean i would run the back of my foot down stairs? Yes. Did I fall down stairs? Still yes but it was mostly because I was two, clumsy and not paying attention, a majority of the time I didn’t fall down as much as I should have.
I was a very energetic child and didn’t really have the understanding that I couldn’t do everything everyone else could do; because in my mind there was nothing wrong with me, I had never known any different regarding my sight I just thought that was how everyone saw the world. On the whole I could do what everyone else could; swimming, running around parks (even if I did run into things), climbing on everything and anything, I even learned how to ride a bike and how to fence (fencing came later whilst i was in junior school). But there was a few things that i wasn’t able to do either because of safety, the health of people around me or me trying it not being able to do it and refusing to do it again (anyone who knows me is thinking about PE right about now).
A baby Amy sat in a high chair looking to the side again with wide eyes that have no iris A baby Amy sat on the sofa with a toy and dummy. she is looking towards something.
When I started Infants school I had a lot more sight than I do now but I was still able to use methods I had put together independently to help me in school. I had what is now known as an EHCP (educational health care plan). This document is put together by special needs teachers from the school, the child’s teacher, and local council, parents , the child and supported by medical reports from doctors. This meant that the school knew what I needed to be able to help me and everyone who was involved would get together once or twice a year and discuss if any changes needed to be made for the future. A majority of these things did help me like having a one to one TA; However, there were still some issues.
A 5 year old Amy at Draghton Manor waiting to get on Thomas the Tank Engine. Amy has purple glasses on that show her wide eyes with no iris’
One of t\he biggest issues i faced included being able to see the board; for this I was given a screen monitor which meant I was sat at the front of the class at all times on a table of my own. One of the other major issues was being able to find my friends on the playground. This outwardly was a simple fix, give my friends bright yellow hats to wear. Admittedly this was a great idea in theory, in practice it wasn’t as simple. If I didn’t know where to look, where the hat might be (because why would children wear a hat on their head?) and the biggest issue… whether 5 year old Amy would allow these hats out. All three of these things meant that finding my friends was still hard.
Even at the young age of 5 I hated looking different from other people let alone displaying that difference. Refusing help of any kind even if it is needed is classic Amy Woodward to this day.
In Juniors school I had similar difficulties this was added on to by the expectations teachers had of your working changing. Suddenly we weren’t learning through playing with toys we were learning by writing. I struggled immensely with handwriting, I had writing slopes, desk magnifiers, paper with larger lines and in different colours. Yet I still struggled with handwriting because I couldn’t see it but I wasn’t understanding that. I just thought that I was stupid or something because my work looked nothing like everyone else’s. I struggled with homework we were given because work either wasn’t enlarged or wasn’t enlarged properly. Some longer term homework we were given meant we had to try and build something. Let me tell you from experience trying to build a model Taj Mahal when you can’t see the pieces let alone the instructions is very frustrating.
A 13 year old amy after running a 5k fun run
I found junior school to be very frustrating at times, looking back on it my years in junior school seemed to be tester years for what I may need in secondary school. was particularly seen in my year 6 when we had three major things hanging over our heads. SATS tests, year 6 production and moving up to secondary school. I also feel sorry for my junior school TA who was absolutely amazing; but I put her through hell on occasion because i was frustrated and didn’t know how to express it.
September 2014 roles around and i am starting secondary school, a completely different secondary school to the people I have spent the last 7 odd years getting to know. So I already feel like a tiny fish in a massive pond. Throughout infants, and junior school I was bullied for being the “kid alway with and adult” or the “kid with the weird eyes” or just the “weird kid” this didn’t change in secondary school.
A 11 year old amy dressed in her school uniform
Secondary school was the place I learnt how to properly fight. Not in a literal sense ( I couldn’t physically fight anyone).It also happens to be where I turned from annoying whiney kid to annoying argumentative teenager. I had to fight for a lot in secondary school whether that be the right support in classes, support for exams or even something such as being listened to by teachers.
I spent a lot of my class time going to the print as the teachers often forgot to print the materials out in large print for me. You may be thinking “but Amy you could of just used a laptop” and you would be correct unfortunately despite it being in my ECHP that I needed to use technology and learn how to touch type I was only provided with a laptop in my last year of secondary school. Which I was given very little support using.I also had teachers who would try to play interactive games with the class such as throwing a beach ball around to get answers or in drama lessons playing a game where you had to duck to avoid something. As you can tell I can’t remember the names but I do remember not being able to access them and I remember getting my friends in trouble because they were trying to help me play the game that the teach who knows I am registered blind decided to play anyways.
A lot happens in secondary school but a major thing that happened for me personally was losing a significant amount of sight. Now Aniridia is a degenerative condition meaning it worsens over time, most Aniridia patients have stable vision until they are around 40 or older which is when secondary conditions like cataracts generally start causing issues. However at around 13 I lost a significant chunk of sight which meant the glasses I had been wearing made no difference and their was little point in digging me a new glasses prescription as it wouldn’t help, . Although I did continue to wear my glasses partly out of habit (I had been wearing glasses since I was 18 months old) and partly out of denial.
Whilst in secondary school I was supposed to be having mobility training, tough typing training, and beginning to learn braille. None of this happened apart from the one hour of mobility I got at the end of year 6 which is clearly not enough.
This did make taking my GSCEs interesting as despite being 13 my school decided to trail spreading GSCE exams out from year nine . Which essentially meant my year group took three GSCEs in year nine, two GSCEs in year ten and five GSCEs in year 11. This sudden loss of sight caused a lot to happen for me personally for my mental health.
Their was a lot lacking in my mainstream education that I should of had. When it came time to choose sixth form I decided to look at a specialist school for the visual impaired in the hopes it would give me what mainstream didn’t. However I already had a fight on my hands just to get into this school due to the fact each pupil is paid for by the local county council, who don’t like to pay for out of county education when they don’t have to. I think the best line I heard when going fighting my county council on this was “we can provide for Amy with Essex… but we can’t”.
I did eventually get into this specialist school due to the lack of support anywhere else and this is where I learnt the majority of the things I should have been learning since I was a child. I learnt to touch type, I learnt how to use assistive technology I learnt braille and had mobility training. I can’t help thinking how much they would have helped me if I learnt sooner not only physically but emotionally and mentally. I started sixth form in September 2019 and if you remember the first Covid lockdown happened in March 2020. Which quickly put a pin in my independence progress. This is part of the reason I am still not the most competent with braille and technology.
I mentioned earlier losing a significant amount of sight affected my mental health well that was nothing compared to what would happen during my sixth form experience .
March 2020 also happened to be when my sight started deteriorating quickly than I knew how to handle it. I went to Moorefeilds A&E several times and was told several times that I was fine and it was “probably” this or “probably “ that. In the end I was told by a doctor that the cataract in my right i had fully formed but there was nothing to say the left eye would do the same. Now I am 100% convinced my left eye heard this comment and went hold my beer because within about a month we were back in Moorefeilds A&E being told I had cataracts in both eyes now fully formed.
An eye with no iris and a cataract formed in
This meant that I had a little above light perception, I could see lights, some colours and movements . It also meant I had to quickly re adapted and relearn everything I had been taught over the years. The worst part was everything was happened so fast I didn’t have time to process it all. Which severely affected my mental health. I had very severe depression and anxiety due to the amount of uncertainty surrounding everything that was happening. It isn’t normal to see patients with cataracts at 17 and it certainly isn’t normal to see cataracts develop this fast. If the doctors were worried about why this was happening then I sure was.
I went through lots of different testing to try and figure out what was causing my sudden sight loss.. From ultrasounds to X-rays to blood tests and eye scans. I also did a lot of department hopping from infection clinics all the way to the neurology department. During my department hopping I was diagnosed with a muscle spasm disorder, severe anxiety and severe depression.
To this day I still don’t actually know why I lost so much of my sight so quickly.
After a few more years of home schooling relying on formats I have never really learnt like braille I finally had my right eye operated on in August 2021. But because I am me I like to be complicated and the surgery wasn’t as straightforward as the team of specialist doctors I had. Whilst they did remove the cataract and place another lens in my eye; they had use normal stitches -instead of using dissolvable stitches- which you have to have pulled out manually. I can confirm having stitches pulled out of your eye isn’t painful but it is very uncomfortable. I ended up having to have two sessions to pull all of my stitches out due to how severe my nystagmus is.
Fast forward a year and I finished sixth form in June 2022 and was preparing to start university which is stressful for anyone let alone someone with a disability. For me this stress was certainly NOT elevated by DSA (Disabled Students Allowance) who quite frankly have probably caused my some of the highest levels of stress I have had the past year. For example they have only provided me with some of the equipment I needed in the last three weeks of the term. On the other hand the course and disability staff at my university are amazing. They have let me try and figure out what is best for me and listened to me since I first contacted them back in June 2021.
There is something ironic about the DSA staff who have been trained to deal with disabled students restricting my access to equipment and support I need; compared to the university staff, who have either not taught a Blind student or have limited experience with them , in a sense letting me lead both myself and them in where I may need support.
Although I still doubt I actually can do this degree (you didn’t read that Paul) I am actually doing something I enjoy immensely which is going to help me get a job in an industry I love with nothing holding me back.
As of the date this has been published I should be 1 day out of surgery on both my eyes. I will have had the cataract removed in my left eye and in my right eye they will be removing what they believe is built up cells that have formed behind the lens in my right eye . This surgery is to try and save the sight I may have currently in my right eye I can see 1m on a very good day.
Don’t take this as gospel!
Not everyone is like me. I happen to be that one complicated case who has had a complicated life with one complicated thing after another. I attract complications. The odds are someone with Aniridia with have sight which is fairly stable. I’m not going to lie and say that their sight won’t deteriorate because it probably will. I know a few people with Aniridia and for those who have cataracts they don’t tend to cause issues until they are in their 40s. Aniridia like all eye conditions is a spectrum so don’t freak out this just happens to be my experience. It is important to remember this is just my experience. My experience of school, medical conditions or even things like support i have been given is my experience. It will be completely different to someone else’s.
The Essex TEC show is an event hosted by Essex county council it aims to showcase new and immersing assistive technologies to help disabled people. When we talk about assistive technologies which will help provide care; people will often immediately think of older people with massive buttons or call systems. Admittedly I am also guilty of thinking this; when I first heard about the event I immediately thought of those stereotypical big buttons that you often see in elderly care homes.
With that in mind I decided to go along and see what there was too offer and to see if I could get rid of this stigma. I came out of the event with so much different information to consider. But there was thing one thing I knew for sure which is that my perception was incorrect.
With that in mind instead of writing a load of information that you could easily find out else where; I thought I would rank each of the stalls that I visited whilst at the event. My ranking will be based off of my opinion as a blind person, what my opinions are as a young disabled person and if I think it suitable gets away from the stigma of traditional assistive technology.I
A picture of the Yorbl logo. The background is green/blue a with the word Yorbi technologies in white. The Word Yorbi is big, bold and centres in the middle the letter y is shaped in a curved arrow with a small white circle just above. The word technologies is smaller and alligned to the right hand side.
Yorbl primarily sells docked devices that have a very simplistic layout and allow a person to either ask for help or confirm your okay. This device does have the ability to work with use of voice by saying “Excuse me, get help”. The premise for making this a lesser used phrase is a good one but part of me (it could be the young adult in me) can’t help thinking that if someone was in desperate need of help they might not be able to say this phrase. This is a docked system with a fairly large display which makes me still associate it with the stereotypical big button.
I wasn’t 100% convinced with how accessible these products would be for me as a blind person. As whilst I could use the voice feature like I said earlier if I was seriously hurt and not in the devices vicinity it makes it rather pointless to have. Especially as a younger person If I am going to use a voice controlled device I am going to be more likely to use something like an echo or Google dot; which are smaller, sleeker and use smaller phrases to activate devices.
This is an example of what the docked Yorbi device looks like. It is a screen with three section the section on the left is red with the words get help in big white writing, the middle section is black and contains the date and time in white on a black background and the right section is green with the words i’m ok in big white letters.
I personally wouldn’t buy the primary products this company sells, however, I did like the Yorbi sensors and peripheral devices. These can be used to detect air humidity, pressure, temperature as well as movement, door and bed occupancy sensors. Whilst these might not be what I need to help me I can see how they may help other disabled people with condition which mean they struggle with things like temperature, eating or even wondering off.
5. ZinMobile/ZinWatches
A picture of the ZinMobile logo it is a purple background with the words ZinMobile in white. The word Zin is in a thicker and bolder font compared to the mobile part with is thinner. A picture of the ZinWatches logo it is a purple background with the words ZinWatches in white. The wors Zin is in a thicker and bolder font compared to the Watches part with is thinner.
Zin had both watches and handheld buttons I did like these they were portable and semi-discrete. I did find the handheld buttons and watch faces a bit bigger then I personally would have liked. As a blind person i would need to use a watch which has a built in screen reader which these watches have. Unfortunately for Zin they are only this far down as there was another company at the event who I personally liked more.
The CareFall24/7 logo is a white background with big black letters saying CareFall24/7 there is a red c shape-between the 4 and 7 which almost looks like an apostrophe.
Carecall is a company which provides technology all the way from pendant alarms to detection devices and krysafes. The service can be tailored to suit an individual needs and provide constant help all year round. I personally really like the idea of having a key safe which is set up by the company and can be accessed by care staff when ever a disabled person is in need of help of in danger.
The possum loho is on a white background with the word possum in big black letters aligned to the left above the m in possum there is a butterfly which is an ombre from pink to light orange. Underneath the words possum are the words life enhancing solutions in orange.
Possum is a company which provides assistive technology for people with conditions such as dementia, epilepsy and learning disabilities. I liked the range of variety offered from the Qwato device to the alert-it epilepsy system.
Whilst personally I wouldn’t have need of so,e of these things but the range of variety in products impressed me even from the smaller devices such as pill dispensers.
The Millbrook logo is on a white background on the right hand side is a circle with the letters MH in blue. Next to that are the words Millbrook HEALTHCARE GROUP in big black bold letters.
Again the wide range of different products amazed me here from the more simplistic products like supports cushions and braces to shower chairs. All the way up to the more niche products such as white canes, doorbell strobe lights and bed/mattress raisers.
I found myself considering what products would generally help me when I was old enough to live alone. I was also really impressed with the consideration that was put into accessibility so that someone with disabilities would be able to use these things independently.
The Oysta logo is on a pale pink background eith the word OYSTA in big white letters at the start of the word OYSTA is a yellow oblong shape. Underneath the word OYSTA is the words INTELLIGENT CARE TECHNOLOGY. The words INTELLIGENT CARE are in yellow and bold and the word TECHNOLOGY is in white bold letters.
Oysta aims to help bridge the gape between health and independence. This is something I personally felt they managed to do really well with and whilst they didn’t have as many products as some other companies they had enough to give you an option. The primary use of Oysta technology is fall detection and to make sure a disabled person is living life independently. I really liked the buttons that they sold as they were small enough you could stick them on to a lanyard or a key chain and were built to withstand water. I really liked these buttons because I can easily place them somewhere that is discreet yet still accessible and as someone who is living in temporary accommodation having something you can attach with adhesive is very useful. I also liked that you could get the buttons in a lanyard style.
The buttons can be used in conjunction with the Oysta app which is built simply and can allow a person to se5 up a contact to be called when they experience a fall. These contacts can also get in touch to make sure the person is okay. The oyst app can also be used on its own which is even more handy for young people as it makes it even more discreet. Whilst currently the app isn’t accessible with screen reader technology the company is about to update the apps features.
I don’t know what it was about Oysta that drew me in more than any of the other companies there, Whether it was how discreet the product. Is or. How inclusive of age, ability and needs it is. Whatever it was it sure worked
A picture of the Oysta app the app has a simplistic look with a blue background and the home button in the top left corner below the home button is the OystaCareApp logo. The middle of the app shows for buttons going vertically the first one says SOS and is on a red background the second one says contacts and is on a grey background, the third one says reminders and is also on a grey background and the last button says How are you feeling and is on a yellow background. At the very bottom of the app on the right hand aide their are two buttons one says view settings and the other says about us.
Overall there was nothing majorly wrong with any of these companies and they all had great products available. A massive thank you to anyone who spoke to me at the event and even answered the questions I asked on accessibility of your products that I just threw at you.
I found the event very insightful and was opposite to what I had expected. If there is an event in your area similar to this I would recommend going, even if it is just for half an hour.
June 21st marked the second annual united in diversity event held by the Essex multi-schools council.This years event was held in Braxted Park an amazing venue with wide open fields and marquees; each part of the venue held different stalls which promoted different organisations which all aimed to help disability.
An empty marquee where ambassadors of the Multi-School council will hive speeches and different stalls will be held
Whilst at the event I had the opportunity to talk to Mufti-School council leader Kierran Pearce about the Multi-School council, united in diversity event and any plans there was for the future.
“The Multi-School council is all about promoting positive perceptions of difference and making sure we listen to young people. It’s about doing things that young people want us to do which challenges those perceptions. “
Kierran Pearce Multi-School council leader.
The Multi-Schools council was set up in 2012 and came about as Kierran was running a school council at a special needs school and a girl said “it was great to do it in school but one day she would have to leave and other children and adults didn’t understand difference”. This brought up a discussion about how this could be done on a wider scale and they decided that a Multi-School council needed to be formed which would bring different schools together and listen to children in different schools. Ever since it has grown and grown with the local authorities now funding the group and being part of the Essex youth service.
The Multi-School council hosts events throughout the year such as the special school games which invites all the special schools from across Essex and celebrates their ability in sports. They also hold ambassador meetings where young people come together and get involved in different services. A bug example of this was Kim Woodward who designed the logo for a new pathway in North-Essex for children to get the right support at the right time.
“Our work is decided by young people and then we go make it happen.”
Kierran Pearce Multi-School council leader
The Multi-School council has what are known as ‘ambassadors’. Ambassadors get involved in what they want when they want. They are all within what are known as ‘working groups’ which are based on what young people are interested in. These groups include things like public speaking, visual impairment, ADHD and Autism. The children in these groups then come up with ideas which the council makes happen. Some of these ideas include social media videos, midnight walks, climbing a mountain but it is all very dependent on what the children want to do.
The aim of the United in Diversity event, which was the idea of young people, is that it brings together children from different schools. There were pupils from infant school to secondary schools to special schools and a pupil referral unit. It is important to allow pupils from any background to get involved in the event. To create change in society we need to start woth young people so when they get older they understand those people who may be Hearing impaired or those that have autism.
“If they can understand it when they are younger, we hope that as adults there will be more awareness and more inclusion. And then the world can change”
Kierran Pearce Multi-School council leader
Kierran along with the rest of the council are hoping that coming to the United In Diversity event will help young people to be more accepting of each other and help schools become more inclusive.
You can listen to the full interview below.
There were loads of different stalls at the event from a therapy dogs to wildlife to music and games.
As is expected at a disability event their was an SEND (special educational needs department) stall. This stall aimed to help schools and young children learn how they can have their voices heard and promoted participation as well as events like united in diversity which children created themselves.
A picture of green grass with blue cones on and a blue pop ip tunnel which are part of the dog obstacle course
By far i think the most popular stall was held by the therapy dogs. Who not only gave children (and adults) a place to calm down and collect their thoughts but also gave them exercise as they ran the dog through the obstacle course.
One of the other popular stalls was the wildlife art stand. They are really hoping young people will take away how inclusive they are and get involved with them.
One of the other stalls at the event was Clearsteps. Clearsteps promotes a healthy toilet campaign called step ip to the challenge. Which hopefully will inform schools and pupils of what the correct position is yo take a poo and what the different poos are.
The games stand featuring connect four and jenga The music stand with loads of different instruments, including ukuleles, violins, cello, saxophone, trumpet, and tromboneUnited in diversity T-shirt, making standAutism stand where you could make your own rainbow with pom-poms
There were also 4 different speeches at the event 2 in the morning and 2 in the afternoon. The speeches covered things such as how you could be more accepting of disability, all the way to how disability should be viewed.
Young girl making a speech to all the schools that attended the event
This event was thoroughly enjoyable, and hopefully a lot of schools get a lot of knowledge or ideas on how they can support their pupils further. When I was younger, I didn’t have anything like this, and I feel having something like this would’ve made all the difference.
July is Disability Pride month so what better time than to hold Disability Expo? This year Disability Expo was held on the 6th and 7th July at the Excel in London. As someone who is registered blind, has multiple different eye conditions, neurological and mental health conditions; I decided to go and see what charities or organisations were out there for disabled people.
Initially I was very reluctant and nervous to attend this event. Would it be too loud? overly crowded? too bright? Was I going become overwhelmed which would lead to who knows what. I am convinced my thoughts were on a crowded non-stop carousel. But I managed to slow down to carousel enough to attend the event.
Before the event Disability Expo provided information on how to get there, food and drink, BSL interpretation/live captioning, audio description and a show guide. Personally as someone who is blind and has anxiety knowing what is happening when helps me to stay regulated; however, it was quite hard to know what was going on when the show guide didn’t work properly with a screen reader. Quite ironic as it was sent by Disability Expo themselves. I was also unable to get the audio description app they were using to work.
A video of me trying to navigate the Disability Expo show guide with voiceover
Arriving at the Excel centre security staff inform you to go down to hall N4. As a blind person if I hadn’t been with someone else I would of found it very hard to know if I was in the right place. Part of me thinks and feels there should be more information provided on how to get to the hall once you arrive at the centre or there should be staff at the entrance to offer more help.
The first thing that I attended was the People’s Panel on disability representation in the media. I found this talk interesting especially as someone who is hoping to get a job with in the media. For me there were several points made that resonated with me the first was from Mark Webb who told a story of how there were two adverts back to back which showed a wheelchair user which…
“brought me almost to tears.”
Mark Webb People’s Panellist
Mark did also express how more disabilities need to be shown as not everyone is a wheelchair user. The other thing which stuck with me was how TV productions either don’t consult disabled people or talk to disabled people and then ignore what has been said. This was empathised by both Ciara Lawrence who works for a disability charity and Nate Williams who is a Paralympic Producer. Nate Willia0ms said that he always views the “athlete first then disability”; and that he works with the athletes on how they want to address their disability. Ciara who works for a disability charity talked about how a TV show wanted their help on what a disabled person would need, so the charity went and offered help and then the TV show didn’t hire a disabled person. Another example of media misrepresentation is imagined up story lines this happened in a soap opera where a character had MS and started having hallucinations which is not a symptom of MS. This makes the public misinformed of conditions meaning disabled people feel responsible for correcting this.
“we as people with a disability are all different. We all have our own likes and dislikes and our own support needs”
Ciara Lawrence
After this talk finished it was time to go and look at all the different stalls.
Unfortunately I felt as if I was limited to the stalls I could interactive with; this was because a majority of the stalls were aimed at wheelchair users or those with Autism/ADHD. Personally this made the Expo feel stereotypical as not every disabled person is in wheelchairs. it also felt as if the point of the Expo was being ignored as not all disabilities had representation.
In fact there was only one stall which focused on people with visual impairment, FLAG-ME VI. This shocked me as over 2 million people in the UK have a visual impairment with 340,000 of those being registered blind. There was also only one stall representing MS (talk with MS) and one stall for sclerosis/spina bifida. these again are conditions which affect a large portion of the UK. over 130,000 people in the UK have MS with 130 diagnosed a week. It is also estimated that between 5 and 10 percent of the UK population have spina bifida.
With these statistics I personally would of thought there would be more stalls representing these conditions. I was unable to find the MS stall and there was no on at the FLAG-ME VI stall when I got there so I couldn’t even talk to these stalls.
There were stalls that I did manage to interact with and get information from. Below are some of my take aways from each stall.
The first stall that I spoke with was Wonder Pax and I can say the name is true. This was a stall which was selling reusable heated and cooled gel packs. There was a variety of different packs to chose from which all helped with different things. There were hand, neck, back and eye gel packs which all helped to alleviate muscular and joint pain as well as help circulation, decrease muscle spasms and expand muscle and tissues. The eye pack also helped with migraines, headaches and dry eye. All of the gel packs were designed so that they wouldn’t burn a persons skin. Initially I was very sceptical about this stall, I have tried using heated gel packs before to help manage my pain and muscle spasm but I found they never helped. These packs honestly helped so much with my pain in the few minutes I was at the stall that I was tempted to just stay there all day. I did come away from the Expo with one of every single gel pack they had which came in hand when I got home and was in pain from the day. Wonder Pax definitely suit there name. The only complaint I would have is that there products are expensive and it is easy to say ‘I will just get one from elsewhere’.
Next up was Aventido an assistive technology stand. As someone who is reliant on technology this stall intrigued me although the company isn’t primarily aimed at blind people they still have to technology to help. In particular the OrCam (which is small device) can read text, recognise faces and help identify objects in your surroundings helping blind and visually impaired people live and work independently. Aventido also offer text to speech and speech to text software which can help blind people especially those with other disabilities. I did find this stall interesting and enjoyed talking to the staff who were helpful and gave me some ideas of how I can get these products through DSA or access to work.
Integrex are a sensory room company which offer interactive floor and screens. integrex offer and audio visual experience, with all of their visual games and scenes come with music or a sound. This did make the experience more immersive and inclusive. There was nothing to say that the software was accessible with screen readers but there is potential that it does; some of the games were harder to access if you have a visual impairment. I did like the idea of this company as it did help with some of the anxiety I was feeling at the event but I don’t think I had enough time at this stall to accurately pass judgment on this company.
World Explorer Holidays is a company that helps disabled people book holidays; the company handles flights, tours, hotels and much more. What I really liked about this company was that they openly admitted that they had limited knowledge on other disabilities such as visual impairments and that they were already looking at getting braille leaflets. The idea that someone else helps you book and plan your holiday immediately made me less stressed and the fact that they would be available before, during and after your holiday to help represent you in any issues you may have. (if your reading this Paula I thought you were amazing and I loved your company) In the future when I am able to book a holiday I will definitely be looking at this company for help.
Bond hotel also offered fully accessible holidays in Blackpool for people with physical disabilities, learning difficulties and mental health conditions.
Speaking of travel Great Western Railways also held a stand; now I have previously helped GWR with improving their accessibility and it was great to see Dan Pearce again especially with all of the new products they have which help disabled people, particularly those with visual impairments. My favourite product that were on display were the cards that let people know you had an assistance dog underneath the seat which GWR designed and was then taken on at a national level. I also really liked the idea of the help booklet which informed people of what help you may need and your most regular stations (this product was also available in braille which would help me greatly) this is another product I feel needs to be taken on at a national level.
The hidden disability sunflower lanyard company were also in attendance raising more awareness to the sunflower lanyard campaign. They were giving out lanyards, badges, stickers, magnets and sunflower seeds. This was one of the only stalls I felt represents all disabilities.
Like I said earlier there were many stalls that were aimed at wheelchair users such as Chunc Wheelchairs, Great Britain Wheelchair Rugby, Mybility All Terrain Wheelchairs and The Wheelchair Alliance.
In between looking at all of the stalls I also attended a talk about accessibility at the BBC held by Robbie Crow. I found this talk very insightful and interesting particularly as someone who is hoping to work at a media company in the future. Robbie talked about how the BBC had a designated accessibility team which worked on making sure assistive technology worked with the software and how the BBC helps fund what you need to make sure you can start work within 4 to 6 weeks instead of having to wait for the Access to Work scheme to fund what you need. He also talked about how there are specific projects which help recruit disabled people. The BBC has what is known as 50 20 12; this means that they want to ensure that 50% of the workforce is women, 20% are from BAME communities, 12% are disabled. Afterwards I spoke to Robbie about whether there were limitations for people with certain disabilities due to accessibility issue with screen reader software and things like teleprompters; for this Robbie said that there would be two options using an earpiece to have it read to you or using braille which has some downfalls as you have to be a fast braille reader, You can find our more about the BBC diversity and inclusion aims below.
Robbie’s speech helped me feel like I was capable of getting a job in the future and I was very grateful to him even if I did momentarily forget how to communicate with someone when talking with him.
Overall I was definitely expecting more from this Expo. Personally I felt there was a lack of representation for those with hearing/sight impairments, some neurological/neuromuscular conditions and some mental health conditions. whilst there were some stalls there that would help with this there are many other charities that could have been invited to make it seem less like you had to be in a wheelchair to get help. If I had been on my own I do worry that I may not have found any of the stalls I wanted too as I would be unable to see which stall/area i was in and the app for audio description didn’t seem to work for me.
Despite this I did feel it was a worthwhile event and I particularly enjoyed the panel I went to. All my worries about it being too loud or too crowded were wrong whilst the expo was crowded it didn’t feel as if you were being squashed like sardines and it wasn’t too loud compared to other places I have been.
The AWord 