Category: Disability

Getting Ready with OrCam

I am still putting OrCam to the test! This week I had great fun working out how it can help me with tasks in my day to day life- like getting ready. The OrCam can tell the difference between two face cleansers in near identical packaging within seconds. It can also tell me the name and shade of the foundation that I need to pick up at the shop. It feels so good to be able to do this kind of task independently again. Fully sighted people take for granted that they can identify anything with minimal effort.

I was amazed that the OrCam could read the tiny information stickers at the ends of my lipsticks. From colours to finishes- It’s the little things that make me the happiest! 

Sometimes with the OrCam you have to refocus the camera and point again before it gets the text’s wording exactly right. In the case of the lipsticks it was easy to tell when I needed to retry because the OrCam would read numbers (presumably from elsewhere on the sticker) or beep.

OrCam are hoping to bring colour recognition in on the next software update, this will be the icing on the cake for me! This device allows me to be curious and to explore the things that I wouldn’t feel were important enough to ask someone else about. When you’ve got stacks of brown envelopes you need to go through, queries like: “what is this nude lipstick shade called?” Slip into the ether of unimportance.

This video is short and sweet but I wanted to show how versatile the device is and how, albeit with some perseverance, it can read even really tiny text! More OrCam findings to come! 

Trying the Orcam for the First Time

I have been following the developments of OrCam since 2013 when I first contacted Dr Yonatan Wexler wanting to know more about this peculiar gadget he was envisaging. Dr Wexler kindly kept in touch with me over the years as OrCam developed and grew. Last week I was loaned an OrCam MyEye to wear for a month, in order to test it out and review it from the point of view of a young blind person. It is a four year dream to get my hands on this technology and I can’t wait to share my findings with you.

OrCam MyEye is a tiny camera that is positioned on the top right edge of any pair of glasses. A black wire runs behind your ear and to a box which contains the device computer. It is light and can then be clipped onto your belt or clothes. When turned on the OrCam MyEye can recognise pre-saved objects/faces and read text to the user via a bone conducting ear piece. The device is discreet and excels in recognising text- both on screens and paper.

Below is a video of myself and OrCam trainer Judy as she introduces me to the device for the first time. As you can see I was sceptical at first as to whether it would read my favourite poetry book accurately. A week on and I am still amazed at what OrCam is able to do. I am so excited to be able to share this ground breaking new technology and to provide a realistic and grounded review of the product. From what I’ve experienced so far, I firmly believe OrCam could be instrumental in the lives of many visually impaired people around the world. I will be putting the device through its paces in the life of a young person with sight loss. In the UK there are already over 600 users of OrCam and worldwide there are thousands. So, are we looking at the beginnings of artificial vision?


Parents of Children with Disabilities Online

This view is not going to be a popular one, but I feel the need to say it. I have had many conversations with other disabled people, many of whom agree with me. We need to talk about parents of disabled children’s online presence.

I don’t want to stand on anyone’s toes here, I don’t have children and nor do I have a disabled child, but I am an ex child with a disability. I get concerned when children are being posted about, paticularly when they are too young to know what is shared and who is seeing it. There are cases where I know children will never be aware of this, even as adults, but I worry there may be children who grow up to read the woes of their parent online which could be damaging to all parties involved.

Many parents say they just want their children to be like any other, mainstream and accepted. But most able bodied children don’t have a blog for every visit they make to the doctors and a vlog for every action they make. I can’t help but feel that the image of ‘special’ children is being perpetuated here. It isn’t harmful to the audience it is intended for because if we look at it closely the audience is parents of disabled children. Not disabled people as a whole. I understand there needs to be networks and forums for parents to share on, but with these stories going more and more mainstream it is causing problems for the disabled adult world.

If you were new to this online world you would be forgiven for thinking that all children with disabilities are trapped in a timeless bubble. They don’t age and competency never arises- everything they do is amazing because of the way they are. I feel so angry at parents who gush on Facebook about how amazing their disabled child is, because there is a shadow to the words. Despite. This has been achieved despite their disability. This implies that disability= none achieving and anyone who does achieve is seen as an exception.

The nature of the posts alone, being by someone other than a disabled person, perpetuates the image that disabled people do not have a voice and cannot speak for themselves. There are so many disabled bloggers out there but most of the posts that hit the highest view counts are from parents.

Many parents share their stories to ‘raise awareness’. Though this is an admirable cause it could also backfire when your child grows up and tells you they didn’t actually want to be the poster girl of a national charity or have a charity started in their name. Personally I would be mortified if my parents had done this. How many more donations would the major charities supporting disabled children have if there were less small charities run by parents, each with very similar mission statements but in different children’s names? There are good causes and there are, of course, previously unnoticed needs for charitable support. But if you are fighting for the same thing- why don’t you work together?

When I was fourteen I started blogging. I knew what I was doing and was aware of what I was posting and its potential consequences. I try to raise awareness of my conditions whilst, perhaps selfishly, using blogging as a way of therapeutically talking about the problems I have. But I am talking about myself and I write every word myself. I am my own publicity officer and I choose how to present my client.

I want to hear from other disabled people like me; I want to hear their voices and make others listen too. I want disabled children to know that people will listen to their voice when they grow up. That parents are brilliant allies but they also always have the network of people who share their disability. I want parents to have a network to share on and receive support without having to share with people who just think disabled kids are cute.

Allies are an important part of any community. They are the people who are not part of the minority but, because they are members of the majority and with the way things are at the moment, they get listened to more. True allies are brilliant because they point and say “listen to them” and people do.

I just want everyone’s voices to be heard and no one to feel misrepresented. We all need space to express ourselves.

“If I Was Blind I’d Kill Myself”- Advert Hurt

The blind community is particularly vigilant on news stories surrounding our disability. We are very social media prominent and if there is a story out there on blindness, we are on it. That’s why this story hitchhiked its way up to the top of my newsfeed in the first place. The news is that Facebook has banned sight loss charity RNIB’s latest advert. Apparently porn and weight loss stories are fine, but a thirty second talk on sight loss? Get that stuff off our screens.

I do not support the banning of the advertisement as there is so much worse out there but the move does seem pretty petty on Facebook’s part. I am however glad the clip will not be on Facebook. I strongly feel that some sight loss organisations fear monger the general public into giving money and give very little to the VI community in return. Granted, losing my sight wasn’t a bundle of laughs but it wasn’t the worst thing ever. On your list of things to achieve in your lifetime developing a disability is somewhat absent, but so much worse happens every day. War, famine and terminal illness. You can go blind but you can still have friends, you still are alive and have capacity. Things are harder but not impossible. There is no money in an advert showing the cooler parts of sight loss (such as touch typing and cheaper train fares) but I am sick of my disability being portrayed as something that makes life not worth living. A man at a bus stop once told me that if he were to go blind he would kill himself. I thought this was quite a inappropriate thing to say to a sight impaired fourteen year old, but publicity like this reinforces such viewpoints. Blind equals broken.

Sight loss isn’t just something that happens to older people, it happens to children- boys, girls, everyone. I wish that there was a way to spread awareness that blind people do just get on with life. Not ‘despite it all’. Not ‘thanks to my wonderful guide dog’. Just because they are the same as everyone else and want to achieve. We can get jobs and we can have fun. Whether we are at the point that we need an advert showing a blind person walking to the chippy or chatting people up in a bar I don’t know- but we need to be present VI people as people… who do leave the ophthalmology department occasionally.

When RNIB did try to do an advert showing young people with sight loss it was the equivalent of throwing elephant dung at an industrial fan. It was the story of little Emma who used to have a quality of life but has now had it revoked by the cruel gods of sight impairment. She then went into social isolation and became just a waif like existence. One would think from watching campaign videos that blind people have their major organs located in their eye sockets- so on losing their sight they simply cease to exist unless bailed by RNIB or given a labrador. The idea that one might simply want to get on with their life is unheard of.

A lot of people in the VI community do not feel supported by RNIB; in particular the younger generation I am referring to. Adverts like these alienate disabled people. I’m sorry if this seems crass. Actually, no I’m not.

‘FACED BUG’ Some Results Day Rationale

This post is just a quick reminder that results are not the be all and end all of everything. Your life is not measured in single letters. Your friends will stop talking results surprisingly soon and start worrying about the next thing instead. The whole point of a goal is that it isn’t easy. YOU DON’T HAVE TO DO A LEVELS IN TWO YEARS. It didn’t work this time- slow it down, try again. You will get there if you have your heart set on it.

‘Faced bug’. ‘FACED BUG’ is the only useful phrase I can make out of the all powerful grades: A, B, C, D, E, F, G, U. So many have been given compartmentalised tentacles of FACED BUG as they opened the envelope on results day. But my friends, you have in fact FACED BUG. The bug being two years of bloody hard work, with a ton of stress and all when you are trying to bash in some fun and celebrate being 18. I ask you to look at the bug in question- mine has the face of Michael Gove- and ask “Have I beaten you yet?!”. If the answer is yes, picture yourself stamping on said bug. If the answer is no then get on UCAS of phone college and find a strategy for getting around it. FACED THE BUG. With PESTICIDE.

On a slightly more sane (ha!) note:

August the 13th marked a year since I was bundled off in an ambulance in Southampton; a year since my hospital journey began. I had no results to open but I worked hard at getting healthy and I am finally breaking out of *Cheery Lodge. I’m finally housed. Finally escaping. That’s enough for me! I’ll keep you updated.


A slightly strange but very happy photo of me.


My Mini Hadron Collider That I Couldn’t Do Without

When I was twelve my physics teacher sprinkled the class with enthusiasm in the best way he knew how- a BBC news clip and a print out. Like most physics teachers in the world he was eagerly awaiting the turning on of The Large Hadron Collider like a child awaiting Christmas. Of course no one in the class cared in the slightest until he told us it could potentially break the world and all that we know. At the end of the class he told me that I held in my hand a Hadron Collider, that in his day even the calculator on it would have taken up a room, minimised by this amazing piece of ingenuity. My phone. He retired from trying to make teenage girls enthusiastic about physics a couple of years later; passing his remaining lessons using last resort teaching tacitcs such as burning things and making dry ice out of fire extinguishers. He would then ask the class not to tell anyone until he bought new ones from B&Q.

At the time I didn’t see my phone as something particularly powerful or amazing. I was feverishly desperate to get whatever latest model I could stick my pay as you go sim into, yet I didn’t do much with it post-purchase. Other girls were glued to their mobiles- passing round texts from people I’d never met. The most regularly used contacts in my phone were my Dad, Mum and best friend. I had only about a quarter of my classmates committed to its memory and the only people outside the classroom who knew my number were uncles and aunts. It is due to this that I didn’t really see the need for my phone, I never left the house without a parent and who else would I really need to contact?  When my sight started to get worse my father insisted I kept it with me and it gradually grew in use but (alas) not sociability. My sent items folder was mostly filled with “Where are you?” messages when I couldn’t find the car to pick me up after school in the Netto supermarket car park. If my phone was a person back then it would have been a recluse huddled in a dark room, occasionally checking the time before returning to some form of narcotic enduced slumber.

I celebrated the passing of the first decade of the second millennium by getting in touch with the futuristic technology of the day- iPhone 4. Suddenly the collection of people that I wished I knew in real life could be interacted with in my genuinely real day to day life. Smart people who said things I wish I’d thought of. I no longer depended on reality to make my phone ring. Online friends blurred into just friends; first with the introduction of the Facebook app and then with time the additions of twitter, tumblr, kik, whatsapp, etcetera etcetera. “It’s not the phone, it’s who you have on it!” I remember announcing to my bemused father, having thought through the statement for some time since my enlightenment. This was lucky as it was also the first phone I had to commit to by contract without the leeway of divorce; should I get bored or drop it. But suddenly it was in my pocket all the time. Suddenly I cared if I was to drop it down the stairs (a regular occurrence with its ancestors). As my sight dropped the manufacturer caught me like Newton’s apple falling from the tree with bigger fonts and ever improving accessibility features. When my contract eventually ran out I was excited to get a new phone in my life, but ever grateful to my old one’s years of service.

I’ve had my current phone for nearly two years and it’s contract change time again soon. Maybe it is with me getting older, getting more perspective on things or more techno-dependent but I often think how amazing the thing I hold in my hand really is. I talk to people all over the world through it. I can be with anyone at any time. I can document my moments with photos and postings. I can do and talk about the things I love. I still agree with what little me was saying, it is the people not the phone model. But the internet made the phone for me as I think it has for so many others. Now I, like many others, just have friends. Ones I encountered through cyber space and ones I met face to face. My mini hadron collider has fused friendships which would otherwise have withered from the strain of geographical distance. Technology has shrunk what would have been a tower block’s worth of computing into an ever thinning slice of metal in our hands, and I think that is pretty awesome.

“And Though She Be But Little, She is Fierce!’ – Two Years of Freedom

So today is the day that I write a soppy post dedicated to my faithful sidekick, Noodle…

Two years ago today I regrew my wings and qualified with my beautiful guide dog. The dog that; got me through school, travels the country by my side, keeps me going and helps the outside world keep me going. She is a key sword in my fight against mental illness and sight loss and she is my world.

I have said most of this many, many, times before.

When looking for a quote to describe my loyal companion a long time ago I could find no better than the wonderful Mr Shakespeare:

One of the things people always comment on is Noodle’s skinny frame. She is a very slight dog naturally and in nature when working she is my shadow. She will often peek at the world from behind my legs. We take it in turns to be the brave one. This year I managed to connect with Noodle’s puppy walkers, the people who looked after her for the first year of her life. So here is really, really, little Noodle… She is comparatively quite big now!

Tiny puppy Noodle lying asleep on paving flags

But she is fierce, not in a snappy-bite-your-head-off way, but in her own mental strength. If I ask her to do something she will do it. If I am in a bad situation she will find a way to get me out of it. At our one year anniversary I thought I couldn’t love her anymore, but this little dog is full of surprises and my love for her just keeps growing.

Noodle following me on a swing.

“God will give you your sight back”- Why I’d Be Pretty Peeved.

I am currently staying in a Christian community house. It’s a long story. Up to twenty people live under this one roof and many more pass through the doors on a daily basis. Being here has the feel of being a part of the world’s biggest family and I’ve met so many interesting people with amazing stories to share. I will write more about living in community on Saturday… But for now here is a good old-fashioned Thursday cuppa blog…

My week has been mostly spent walking, sleeping, cooking, playing and (sort of) praying. It has been hectic. On Tuesday evening, a few nights into my stay, I was approached by J. J is a young man from Africa who has come here as a refugee. He is one of the most passionately religious people I know and is a lovely person to be around. I was eating my nightly satsuma at the table in the community room whilst having a theological discussion with him when he said this:
“God is telling me that if you follow him you will be healed, you will regain your sight.”
My heart instantly dropped. I will admit my respect for him then faltered.
I’ve been here before, in fact at one point my own Dad used to hide pictures of saints under my bed asking them to heal me. When I told him politely that I didn’t actually want to be healed he seemed slightly shell-shocked.

The truth is, though I have only had sight loss since the age of eleven, I can remember far more of the past few years than I can of the ones where I had full sight. I think you do the most growing in your teenage years, and I’ve done that now as a VI person. It is what I’m used to. I would have to relearn things if I got my full sight back- what is pretty/ugly, how to understand shower controls with my eyes rather than my hands, how to look for somebody in a busy place.

In all honesty I like being sight impaired. I feel that the world is more beautiful through my current eyes. The way colours mix and blur together, the way I can see through my hands and the way I am not constantly bombarded with visual distractions. I live in a calming blur, the kind most people need pricey drugs in order to achieve.

Now don’t get me wrong- having sight problems is by no means ideal. I’d love to be able to read normally and not have to worry about mobility and vision aids etc. But the truth is… If God gave me my sight back I would be pretty peeved. I am happy just the way I am.

So thanks, but no thanks.

This Thursday's cup of tea

An Empty Room With An Open Door – One Year at College

That’s it, my college room is empty and everything is packed up. I have officially left behind room A9 and all of its memories. This year has been the only academic year I feel I can look back on and smile. Why… I’ll tell you.

My college isn’t the biggest. We are a whole community made up of a minority- people with a visual impairment. It is a bizarre scenario where the minority becomes the majority, and it’s fantastic when even minorities within the minority are accepted with open arms. College is a plethora of different mother-tongues, religions, lifestyles and diversity. People are accepting, because we all know how it feels to be the odd one out.

Everyone is allowed to make mistakes. No one is mollycoddled or discouraged, quite the opposite in fact. You can burn your budget supermarket beans as many times as you like, as long as you don’t set the place on fire in the process there will always be someone to laugh with you about it. You mess up sometimes, and living in college is all about learning how to sort it out for yourself and avoid doing it again next time.

You can be naughty. This will never go in any college prospectus, but it’s true. Many of the students in college have been under the watchful eyes of teaching assistants for the vast majority of their school lives. The pressure this puts a student under is immense: your TA will always know when you didn’t answer question 8h of your algebra homework or misspelt ‘separate’ on page 6 of your essay. I remember the first time at college that I decided I wasn’t going to go to dinner, this is as naughty as I get I’m afraid. No one had previously said that dinner was compulsory but it was a convention I could break. Newly equipped with my new found skills in using the microwave (later advancing to hob, oven and grill techniques) I literally ate freedom for dinner.

People are a big thing. This year I’ve learnt something very valuable. I’ve learnt to let people in and to let them help me. Guess what? It is OK to need help sometimes! In college I feel safe and have established good relationships with staff and students. I feel I can go to them if something is wrong or when everything is falling to bits. I’m always being listened to. The friends who know how little sleep I am getting, so stay awake all night instead of moving me from their bed where I’ve dropped off to my own. The staff who come and sit in offices which smell like antibacterial gel with me and help me make thoughts into words. The ones who hug and the ones who have hope.

My college seems very good at taking in the people who have had it tough. There are a lot of people who have experienced things, discrimination and bullying, which no one should ever have to go through. But somehow everyone gets patched back together or at least get a few steri-strips. Watching people who had no mobility skills at the start of term fly around campus makes me buzz. Seeing people laughing and joking who at first sat silently makes me happy. Change is constantly in the air.

And me? I’ll be back in September, and I can’t wait. College is the first place I’ve been accepted as just being me and where I learnt a bit about how people work, myself included. It’s where I finally got the medical treatment I so desperately needed and where I learnt that I love to learn. Sure, AS didn’t go too well, but I have learnt a lot outside of academia which will support me next year as I focus even more on my studies. I remember my droopy self a week into the new term panicking and being comforted by residential support officer, R. He said “All people come here with baggage. It’s just a case of what’s in the bags and how best you can put them down”. Wise words, and if all I’ve done this year is learn to lower the bags then I am very happy. They are not dropped yet, far from it, but they are now more of a wheelie trolley than a 1000L backpack strapped to me. This way I can walk much further.

Thank you everyone who has been there for me this year.


Partying and The Like

Whether it is a ‘leavers ball’ or ‘prom’ parties are the talk of every school when it comes to summer. My college is no different! Everyone dressing up, dancing and drinking- is there a better way to spend one of the last nights of term?!

I dressed up with everyone else and found myself, possibly for the first time in my life, feeling comfortable in a party scenario. My girlfriend Z made the trip down to come with me and everyone looked lovely. The prom was in the Arts College across the road which (ironically) is being leased to them by my college. So we reclaimed the territory for the night.

There was lots of cheesy music and I danced with people I love, new and old. Seeing lecturers all dressed up and slightly tipsy was hilarious and I danced until I had to abandon my heels… Then carried on dancing.

The night ended with myself and Z driving good friend, M, home in her electric wheelchair as she seemed to have suddenly become intoxicated at the wheel. The event really showed the togetherness of our college and how tight-knit our community really is. All the leavers will be sorely missed. I’m sure they will all do well in their blindingly bright futures… (Ha!)


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