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.

  

BBC Three’s Defying The Label Season Awards

About:

BBC Three recently ran a disability season called ‘Defying the Label’. They showed many programmes on the topic of disability and the content was massively diverse. I watched all of the episodes featured in the season, not all of which are mentioned below, and generally really enjoyed it. Many of the episodes are available on BBC Iplayer and a full list can be found here. I have made my own ‘awards’ for the programmes I felt stood out from the crowd, but please know that this is based on my own opinion and experience watching the programmes alone.

Most Entertaining: The Unbreakables

The Unbreakables was a fantastic three part look into the wonderful students at National Star College. Students there have multiple disabilities, many with some form of physical and learning disability. The episodes presented us with fantastic stereotype-busting characters such as Xenon the ladies man and Lewis the party animal. There were hilarious scenes and heartbreaking ones. I loved this series.

(I’ve also visited NSC and it really is that brilliant!!)



Most cringeworthy
: Find a Home for my Brother and Disabled in an Instant

Oh dear. These programmes really did not do it for me. The emphasis seemed to be on how being disabled makes you different in a bad way. At times I found the narrators squirm enduring with their attitudes. I was hoping for coverage of the major troubles disabled people find when looking for housing. Alas, instead we followed the sister of a disabled young man who has been asked to leave his specialist school. He has severe learning difficulties and features surprisingly little in the documentary. Instead it feels like we go on a magical mystery tour of people who have the burden of looking after disabled people. To me I was horrified when a potential cure begins to be explored as a way of fixing her brother. In ‘Disabled in An Instant’ we meet lots of disabled people talking about how awful it is to be disabled. Need I say more?



Most shocking
: The World’s Worst Place to be Disabled

This programme was stomach turning. Sophie Morgan goes to Ghana to see what Human Rights Watch describes as unimaginable for herself. Exploring prayer camps, fetish priests and huge discrimination- this is a truly horrifying watch as we learn how disabled children are killed in Ghana under the thin guise of a spiritual ceremony.

 

Most Informative: The Ugly Face Of Disability Hate Crime

I’m a big fan of Adam Pearson- he has raised the profile of facially disfigured people massively and has a fantastic sense of humour. This documentary was a great example of a disabled person kicking ass to fight discrimination. The documentary was following his personal battle against social media giants allowing threatening comments about his disfigurement to stay online and his wider fight to bring awareness of disfigurements to the public eye. The episode also raises awareness of how disability hate crime goes massively unreported to the police, suggesting it is being tolerated by disabled people rather than reported. Did you know that disability hate crime is even treated judicially less seriously than hate crimes against other minority demographics? It felt like a programme about disability for disabled people. Excellent.

 

Eye Opening: A Very Personal Assistant

Three part series following disabled young people who are looking to employ like minded carers of the same age. This was a really eye opening and interesting series with really positive disabled role models. I think it would really encourage unemployed young people to explore the possibility of becoming a carer.

 

Special Mention: The Boy Who Wanted His Leg Cut Off

A special mention must go to 11 year old Dillon Chapman and family who share the journey of trying to free Dillon from the agony of having a leg of tumours. I really thought this programme was beautiful, from the fact that Dillon is so sure of what he needs to the fact that his parents support him no matter what. This was the only programme about disabled children in the series but it definitely astounded viewers.

 

Overall Triumph: The Unbreakables

The Unbreakables was wit doubt my favourite series in the season. It will have done miracles for the learning difficulty community in the way of awareness raising and touched on so many wider issues like disability and sex, alcohol and housing. It had me crying with laughter and empathy. An amazing legacy to the disabled community.


My Thoughts on the Season Overall:

The Defying The Label season has been many things. Inspiring, educating, funny and frustrating. Why were sensory disabilities like sight and hearing impairments completely ignored? Why was the focus only on learning and physical disabilities? Why were children with disabilities not so prominent? What about mental illness? These are all questions I would love to ask. The season certainly hit the spot in the way of disabled narratives with many documentaries having a disabled person as the investigator but still sadly most being wheelchair users, which the public see as the ‘stereotype’ of disability. It would have been good to have some more  invisible disability representation to over come this. Overall I feel my hours were well spent on this season and I look forward to disability seasons in years to come.

Happy International Assistance Dogs Week Noodle!! 

Usually I allow myself to write two soppy assistance dog posts a year maximum to prevent the readers of this blog having to endure an unreasonable amount of dog spam. Birthdays and anniversaries are perfect for over the top declarations of puppy love, though I confess that being in hospital has meant *Noodle and I’s qualification anniversary slipped under my radar this year. So let’s celebrate IADW instead.

This pasty-faced girl with an overgrown pixie cut/mullet is me back in December. I was about five months into my hospital admission when I got the news that we were winners of the Guide Dog of the Year ‘Beyond the Call of Duty’ category. I wasn’t well enough to go to the awards but Noodle and I became movie stars for a bit for the filming of this clip. I would love to have a go at making a similar video six months on because I am more able to get my point across now. The film was shot at Heron unit when I was paticularly unwell and I don’t feel like what I said gave Noodle justice. There’s a longer video too if you root around on YouTube; but even in the extended version I don’t think I managed it.

So this post is about Laila (AKA Noodle), and the fact that at 5am this morning she was helping me regulate my breathing. She puts weight on my legs to calm muscle spasms and stays there. She is always calm so there is a gentle breathing pattern for me to try to copy. She doesn’t get phased at all by my daily battles.

She’s been in ambulances and she’s gone mad for reasons I was unaware of at the time. She sometimes will start ‘acting up’ and take a telling off for being naughty because I’m not aware of the oncoming episode. Of course, once I have crumbled and rebuilt, I apologise for accusing her of any wrong doing, usually with a toy or a little bit of cheese.

Guide dogs didn’t give me this little miracle fully formed. She was an amazing guide dog and we were a brilliant team, but what happened for her to begin helping with my mental illness was slow and gradual. She always knew when I was going to go into panic or meltdown before I did but I just hadn’t been watching out for her ways of telling me. When I started listening to her the door opened to her being able to do so much more for me. As my illness has progressed I’m now dependent on her help. Fetching a bag with soothing items or meds in? Got it. Finding someone to help me in a crisis? Got it. Intercepting negative patterns? Got it! Literally watching my back when we are out? Got it! We learn new things all the time together. It’s actually hard to make a list!

If there is a way she can help me then she will do it and, most importantly, enjoy doing it. She reminds me of a doctor or nurse who swings into action in an emergency; movng quickly and professionally and getting a high from the urgency. Not to mention she is always very pleased with herself when she has successfully aided normality to be resumed.

In her freetime Noodle likes lying with her legs in the air, giving kisses and playing with her best friend and fellow guide dog Isla (above).

She’s seen scenes to rival a police dogs memoir and has the guts of a warrior. A very happy International Assistance Dogs Week to my best friend Noodle. You’re one in a million.

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. 

  

Pick a Card… Of Diva Neuro-boilers and Long Metaphors

“Please try again later” – Welcome to my life. My body and mind suck from time to time.

I’m not talking in a ‘I lost every race at sports day’ kind of way, (I did) but I’m talking in a flat out, ‘forgotten how to function’ way. The most recent recording of this occurrence was in my Summer School post.

I’m not going to list fancy words here, if you want feel free to ask for the medical terms in the comments. But the way I see it; at times my mind just says “Nah-ah” to the world and walks away. *sigh*- what a diva.

This ‘diva’ situation is, of course, universally covered in medical handbooks. Short term solutions involve: talking, coaxing and cramming chemicals into the poor boggled neuro-boiler affected. My neuro-boiler isn’t just a diva, here’s a long winded metaphor to explain:

It’s like my brain is at work at its desk, it has a lot of things going on at once and many different piles of paper filled with information. Things are going on all the time in the office and the brain is chugging its way through the tasks happily. However, suddenly there is a fire alarm and the brain has to drop everything and dash out. The alarm could be a drill or a real fire, it doesn’t matter which because the brain still has to do exactly the same thing when the alarm sounds. It overrides everything else and getting out takes top importance, no matter what was going on before it started. It is no one’s fault the alarm went off and it is unpredictable as to when it will happen again. After a while, when the alarm has been turned off and the building has been given the all clear, the brain wanders back to its desk like nothing ever happened and nonchalantly begins to work again.

This is dissociation. It’s a bit of a nightmare and means I am completely cut off or ‘frozen’ for a couple of seconds or minutes at a time. It happens when my brain gets so anxious, for legitimate reasons or not, that it just shuts a part of itself off and runs away. Sometimes it can lead to my major OCD/Anxiety attacks and sometimes it just fades away as if I have shut my eyes for a few minutes. While this happens I am at a total blank, not really thinking and not moving. Although it is scary I am slowly getting used to it, though it can still be worrying for the people around me.

Enter Stickman Communications!

Under the recommendation of a professional I bought myself some of these groovy cards. They explain what’s going on in very simple terms for friends or worried members of the public. I think they are a brilliant idea, especially if you are feeling too embarrassed to explain what’s going on to someone verbally. They cover all sorts of medical problems- not just fatigue and mental illness. They also don’t lead people into asking a zillion questions, which verbal explanations of complex things often do.

On my lanyard -bought by a friend for added comfort- I have cards for all occasions: when I ‘flop’, when I lose my voice and when my ability to think just disappears. I also have a very useful one which says “I really am OK, though a glass of water would be nice, if it isn’t too much trouble?” and also one that is matter of fact, saying that I have an illness and know that my behaviour is different right now, so please be patient. I think they are fantastically discreet and I am pretty sure they will save me loads of time spent worrying over ‘they think I was being rude’ moments.

The second thing I treated myself to was a pack of cards which are ‘traffic light’ indicators.

“I can’t cope”

“This is a bit much”

and “I am ok with this”.

I think they are brilliant as the first two are the phrases I find the most difficult of all to verbalise.

The lanyard lives in my handbag and it is very reassuring as it prevents people potentially calling ambulances unnecessarily. Which is very awkward.

I also couldn’t resist one of these fantastic ‘differently normal’ wrist bands. They are too cool.

Multicoloured wristbands which say 'differently normal'

In summary- Hannah Ensor is a genius and her company will be taking a lot of my money in the future!

Peace, Weakness and Bravery at Summer School

As I mentioned last monday, I was at a Drama summer school last week. Luckily I got all the nervousness and fear out of my system the year before, where I was painfully unsure of myself until a rapid turnaround on the wednesday. By the last day I was filled with happiness and determined to return next year, and be brave for every minute.

So I did. I arrived at the train station and gave my assistance the instruction to find ‘someone who looks like they are running a summer school’.

“So I’m looking for someone in walking boots then?” he replied. I made a non-comital hum in response. But sure enough there was a group of theatre school goers, fronted by a man in walking boots.

Reunited with old friends and meeting new ones I was certainly in my element. The aim of the summer school is to create a professional piece of theatre within a week. This year our theme was peace. I was over the moon to be on the ‘flying colours’ course again, working with the same tutors and many of the same young people who I got to know last year.

I don’t tend to start a new paragraph when talking about my sight, frankly it isn’t worth the bother, but I will make an exception this time. Being the only visually impaired person in a summer school of ninety-nine can make you feel like a bit of a burden sometimes. Theatre is fast-paced and I hate being the one who needs to slow it down to understand what is going on or what I need to do. I was lucky enough to be in the course with the same tutors and many of the same young people as last year. They understood that I wanted to do everything that all the others were doing: no exceptions. People who are new to the theatre school quickly caught on to this too. The tutors are brilliant, and I get on with them so well that if I feel the need I can confidently say: “Don’t you bubble wrap me!” (it has been done). I met new tutors too, including an amazing lady called E who did her very best to audio describe things to me- leaving us both in stitches.

The first half of the week consisted of devising. We were given vague outlines for us to form our own improvisations around. When time was up we performed in front of the group whilst being audio recorded by P, our writer. I particularly enjoy doing this because I just let my mind go and I can be whoever I want for a bit.

The tuesday night is always a long one for writer P. He  stays up all night piecing the audio bites from his Dictaphone into a juicy meal of a play. This year this meant that he had to write until 5am, at which point he got the other tutors up to cast the script. The next few days were hectic, sometimes rehearsing until 11pm until our act was tight. This year the play was a series of satiric scenes on world issues. This included a classroom of dictators and a gameshow for how they can kill their people best. It was very dark humour, but above our heads shocking facts were projected; showing how our acting didn’t stray so far from the truth after all.

Weaved into the summer school is religion. I am only semi religious, but I enjoy this part a lot all the same. It is my chance to have conversations with people my age I don’t usually get to have. For example: “Was Jesus really the ultimate image of peace?” and hearing those who just announce openly: “Jesus was really a pretty cool dude” is fantastic. At my secondary school that kind of thing would get you picked on for weeks.

So was I brave all week? No. In fact I was weaker than last year. A couple of years ago a consultant told my parents and I that I get tired. Not just the normal kind of tired which everyone gets. I get that too, but what happens when I get truly tired is my body and mind just can’t do anymore. It’s because of my eyes, not helped by my muddling mind- “she has to go three times around the lap when everyone else goes around once”. I could write a blog about this alone. Despite being told by multiple professionals that I need to be rigorous in my bedtime routine in order to keep healthy, I’ve always struggled to do this while trying to be ‘typically teenage’. Plus chronic insomnia from my messy mind doesn’t help matters. But for the first time since school I felt the effects of this additional tiredness setting me apart. Of course, everyone was tired at half ten when it was announced we had to carry on rehearsing for another thirty minutes. But my tiredness meant I got ill. Slumping and almost too tired to speak the first time this happened V, a tutor, told me: “You don’t have to be brave all the time you know”. I apologised, I got angry with myself, but then I accepted it. Yes, I can do everything everyone else is doing, but I just have to pace myself a bit.

A masking-taped stage brought our group’s journey to an end. The performance went really well and thanks to the masking tape no unintentional crowd surfing was done. The group was as close as could be. And I felt… free. Free to praise, free to try and free to be tired. I didn’t have to pretend I could keep going. I just had to be brave enough to admit that I had already given my 100%.

The group hug on the stage, which has high visibility tape around the edges.