Tag Archives: recommendations

Aniridia Conference 2023 – My Experience as a first-time attendee

 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.

Mid-Essex TEC Roadshow

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

6. Yorbl

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.

4. CareCall24/7

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.

3. Possum

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 2. Millbrook

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.

1. Oysta

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.

Books that have had an impact on my life…

I am an avid book reader, not as avid and enthusiastic as some, but still an avid book reader. Over the years I have read many books which have had an impact on me personally.

Here is a list of some books which have had an impact on my life and why.

1. Outlander series by Diana Gabaldon

a picture which contains the front covers of ten books the first book in the top left hand corner has a dark grey/black cover with two silhouetted people on a hill top with what looks like mountains in the background the words Diana Gabaldon are at the very top of the book cover and they are in the centre below that the title of the book outlander is written besides the first book to the right is the second book cover which has a deep purple header with the words diana gabaldon in the white in the centre of the header below the head there is a picture of a dinner party the two main characters are sat in the middle of the cover sitting down at a table there are two other people standing to the left of the cover one is sat down and the other is stood up and there is another character standing to the right side of the cover the picture is blurry so you can't see much detail of each of the characters at the very bottom of the cover the word dragonfly in amber are written in the centre and in a amberish colour besides the second book the third cover is on the right hand side this cover is in the middle at the top of the screen this cover has a blue header with the authors name diana gabaldon in white writing in the centre below that is a picture on one side is a women with curly shoulder length black hair she is in a side profile so we can't see her facial feature she has he forehead and one of her hands pressed against a tall light grey stone which is down the middle of the cover on the right hand side is a man with curly ginger hair we can see he has a long nose and is looking unhappy he also has a hand on the stone but on the opposite if the stone wasn't there the characters two hands could touch at the very bottom the word voyager is written in the centre in a pale blue besides this cover to the right is the fourth cover this cover is all read the written is in the middle of the cover and reads diana gabaldon the feiry cross at the very bottom ther is part of a sword which is in silver in the top right hand corner is a cream coloured cover which appears to have a picture in the middle but it is hard to tell what it is as the photo is blurred at the very top in cursive writing it reads dianna gabaldon at the bottom of the cover it reads trails of fire in the bottom left hand corner a white cover which has blue grey writing on which reads diania gabaldon at the very top and at the bottom reads a breathe of snow and ashes in the centre of the cover is a grey snowflake the the right of this cover is a yellow cover that almost looks like parchment but the corners of the cover are blue grey at the top in blue grey writing it reads diana gabadon and at the bottom it reads an echo in the bone in the centre of the cover is a detailed leaf drawing in the middle of the bottom row is a white cover with red edges and corners at the top it read diana gabaldon in black writing and at the bottom it reads written in my own hearts blood in the centre of the page there is a read line and in the very centre of the cover there is a circle the design looks like a wax sealed letter besides this cover to the right is a blue book which is themed to a sun rise there is a silhouetted figure standing on a hill the white writing reads diana gabaldon go to the bees that i am gone which is written down the centre of the cover in the bottom right hand corner ther is a pure blue cover which has dianna gabaldon written at the top and at the bottom has the words seven stones in the centre of the book is a picture of grey standing stones similar to stonehenge
From Mighty Mama Bear Book Blog

I love these books. Initially I thought differently. I started reading these books towards the end of my year 11, mainly because my mum had being going on about it non-stop so to shut her up I started reluctantly reading the first book. Now when I say I love these books I mean it. I read the 8 books (that were out in 2019) in just two weeks. This is where being unable to sleep helps because I have more time to read.

Outlander is a historical/fantasy/romance fiction series which follows a nurse Claire Beauchamp from 1945 who is on a second honeymoon with her husband Frank Randall in Scotland when she mysteriously ends up in the 1740s. Claire ends up falling in love with a outlawed highlander (Jamie Fraser) and gets drawn into the Jacobite rebellion. As the series goes on the characters face different challenges and experiences. Claire ends up being sent back to the 1940s and spends time in the 20th century before she travels back in time to be with Jamie in the 1770s and they both end up being drawn into the American revolution.

Currently the 10th and last book of the series is being written so there is no chance of me spoiling the ending.

Like in many books I found myself connecting with characters in certain situations and I would be lying if I said that some of these situations didn’t resonate with me, even if symbolically.

I have learnt a lot from these books; Diana Gabaldon puts so much research time into these books to make them as accurate as possible making it feel as if you are actually there which is something i often feel can be lacking from historical fiction books. There is also subtly things I learnt from these books such as what different herbs and plants do for different illnesses; which really helped me in my biology GSCE.

These books have a special meaning for me personally as they were the last books I physically read. Yes I read them on an IPad and yes the text was extremely large; but I still physically read them before losing a majority of my sight.

Like I said I love these books.

2. Dog Driven by Terry Lynn Johnson

Image from Amazon

This is a story of a young girl called McKenna Barney who is a sled dog musher. McKenna also happens to be losing her sight to stargardt disease; but she is trying to hide her worsening sight from her family. McKenna on the request of her little sister signs up for a competitive mail race across the Canadian wilderness. A race that McKenna doesn’t know if she can even see to do meaning she has to rely on her 8 sled dog to guide her through the snow and ice with unexpected obstacles around every corner.

I read this book unintentionally when I was also losing my sight and trying desperately to hide it from myself let alone hide it from my family. I connected with McKenna on a very personal level; whilst I wasn’t running a sled race I was still having to navigate the world in a way I had never had to before; and I was having to rely on other people much like McKenna had to rely on sled dogs.

McKenna race ended up leading her to acceptance of her sight loss. I may have taken longer than McKenna to accept sight loss (it could be argued I still haven’t). Looking back on it McKenna’s race for me was symbolic of the journey you go on when losing your sight. There are challenges around every corner and you have to put your trust in something or someone; but you may make friends along the way and you will be welcomed back from your journey with open arms. I think in a sense this story reached me on a level I didn’t want to reach myself and potentially helped me when I didn’t know it.

3.The magic faraway tree trilogy by Enid Blyton

Image from Amazon

This book is about three children Jo, Bessie and Fanny who move to live near a large forest. One day they go for a walk in the wood and discover it is enchanted. They encounter a group of elves who have been robbed of important papers by a gnome. They recover the papers, but the gnome himself escapes up a huge tree whose branches seem to reach into the clouds. Against the elves’ advice, the children climb the Tree. They discover that it is inhabited by magical people, including Moon-Face, Silky, The Saucepan Man, Dame Washalot, Mr. Watzisname, and the Angry Pixie, whose houses are carved into the trunk. At the very top of the tree they discover a ladder which leads them to a magical land which is different on each visit, because each place moves on from the top of the tree to make way for a new land. The children are free to come and go, but they must leave before the land moves on, or they will be stuck there until that same land returns to the Faraway Tree. The lands at the top are sometimes extremely unpleasant; and sometimes fantastically enjoyable.

I read this book as a very small child and I strongly believe this is one of the books that really sparked my imagination and love for pretending I was in a different world. Looking back i think it also made me aware that you can stand up for yourself in the face of “evil”. I think this book potentially encouraged me a bit to much to live in my own imagination“world” which then meant I lacked the social skills needed to make friends because why would I make friends with one person when I can imagine up 20?

But this book definitely has a special place in my heart; due to the adventure and immigration it gave me.

4. Thunder dog by Michael Hingson and Susy Flory

Image from World of Books

Thunder dog is a true story about Michael Hingson and his guide dog Roselle. Micheal was working in the north tower on the seventh-eight floor of the world trade centre during the 9/11 attack. He has to put all of his trust and faith into his guide dog Roselle to safely guide the both of the out of the tower.

This book transports you into Michaels life from getting up that morning to the moment the Boeing 767 hits the world trade centre followed by the moments spent in stairwell B.

I read this book around 3 years ago but I found it so compelling that I struggled to put it down. As a blind person this book gave me hope during a difficult time; it gave me hope that I would be able to get a job, have a life and potentially get throw emergencies (maybe not as bad as these attacks but the point stands). This book also helped consolidate the fact that I did want a guide dog. I want the kind of partnership Micheal has with Roselle.

This book is definitely aa must read if you want to learn more about the 9/11 attacks. I feel as if Micheal not being able to see what was going on before, during and after the attack makes the book that bit more emotionally engaging and realistic.

5.The Tattooist of Auschwitz series by Heather Morris

Image from Last Word Book Reviews

I had this book series on my wish-list for about 4 years before i got round to reading them. This is a trilogy of books; The Tattooist of Auschwitz is about a Slovakian Jew how falls in Love with a girl he is tattooing in Auschwitz concentration camp, Cilka Journey is the story of Cilka who is just 16 when she is taken to Auschwitz but she was separated from the other women in the camp and after liberation she is sent to a Siberian prison camp where she faces more challenges and finally Three Sisters is a story about three Slovakian sisters who survive imprisonment in the most notorious death camp in Nazi Germany.

I found these books really moving (as they should be). Admittedly i did read these in the wrong order accidentally but they all still had the impact that they should have individually and as a trilogy. These books definitely made me think more about what happened during the Nazi regime and made me appreciate what I had more.

6. Diary of a young girl by Anne Frank

Image from Amazon

7.UnPresidented by Jon Sopel

Image from Listening Books

8. Butterfly Lion by Michael Morpurgo

Image from Amazon

9. The Ables by Jeremy Scott

Image from Amazon

You know when your a kid and you like to imagine you had superpowers? Or how someone will ask you what superpower you would want? Well this story is about a group of kids who all have superpowers from telekinesis to giantism. The difference about this sci-fi/fantasy novel is all of the main characters have a disability. Each of their individual disabilities has an affect on the superpower and the kids need to figure out how to use their superpowers with their disabilities.

I really liked this book as it gave you a rough overview of how a person disability affected them in day to day life; even showing that one of the characters was unable to attend school because he was physically drained of energy due to his disability. I also really liked the fact that the characters all got powers you would see non-disabled characters have for example one of the character James is blind and can teleport instead of giving James the power of super hearing which is a misconception a lot of people have about blind people.

Did I read this book whilst in my late teens? Yes I did. Is it a book primarily aimed at children? Yes it is. Did it still impact me as a person? Yes it did. Before reading this book I had never really come across a book which represented disabled characters as being capable of doing more than is expected of them let alone being able to have and use superpowers. If I had read this book as a child it would have given me more confidence and belief that I could go above and beyond the expectations placed upon me.

10. My Hidden Chimp by Prof. Steve Peters

Image from Amazon

Now this technically isn’t a book its more of an activity book. However i am still classing it as it did have an impact on me and the way I viewed things.