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How becoming visible made me more invisible

TudorTudor Posts: 6Member Whisperer

Oliver is a disabled person in his late 20's. He has a diploma of higher education from the Royal Northern College of Music, and is currently studying for a BA Honours history degree with the Open University. He has a massive passion for the Tudor period of history, he also enjoys watching quizzes and history documentaries (particularly about theTudors and LGBTQ+ community) he loves being out in the countryside, building airfix and Lego models, and playing sport. You can find him on his blog at The Tudors Make Me Tic.

When people see me, they can see that I am disabled as I am a wheelchair user. 

Yet so often it is presumed being a wheelchair user is my only disability, or indeed what is causing me the most challenges that particular day due to how society disables me. 

Yes granted if I can't find a dropped kerb then I am disabled most in that moment by my physical impairment.

I have been a wheelchair user for about two years now. Before I became a wheelchair user, I was less visibly disabled. I certainly wasn't invisible, but less visible than I am now.

I am a Touretter (identity first language for having Tourette's syndrome) I've had tics since I was a young child, but they were mild. However, over the last five or so years my tics have become increasingly more severe. They became very visible, people could see and hear my tics, which are virtually constant to some degree. So I became more visible as a disabled person.

When I began to use a manual wheelchair, I became visibly disabled in a way that the public understood disability. They see a wheelchair user and know you’re disabled.

 wheelchair user in the countryside

So, I'm visibly disabled in terms of being a wheelchair user and due to my tics. 

Yet I am also invisibly disabled. I am autistic, severely mentally ill, and neurodivergent in other ways. 

Whilst these are usually invisible disabilities, they can be visible at times. I have had public meltdowns, psychotic breakdowns, and public suicide attempts. Suddenly these things become visible, yet only for that time. 

These disabilities are a massive part of my life, they are part of who I am as a person, and shape the way I live my life. Yet so often they now become ignored, or insignificant. 

Seeing a psychiatrist, the other year who was only interested in prescribing medication for my tics. Even though I tried to explain to him that my mood swings, and anxiety were the main problem. However, no he insisted on prescribing medication for my tics against my wishes. Especially concerning considering it was an appointment about my mental health, not about my Tourette’s, and at no point did I express that I wanted medication for my tics, yet they were forced upon me.

In so many ways I now feel more invisible. People now see me as purely a wheelchair user, and a touretter. I am not saying this is bad to be seen as those things, far from it. However, for people to not think, and to not even want to believe that I am disabled in other ways makes me feel more invisible than ever. 

 

Man in wheelchair in outdoors

Being autistic, mentally ill, and neurodivergent in other ways, is made challenging by an ableist and inaccessible world and society. I am expected to act and be neurotypical, yet I am not neurotypical, never have been, and never will be. Being neurodivergent in a world and society designed for neurotypical people is as disabling as steps is for me as a wheelchair user. Yet people do not think of accessibility for invisibly disabled people. Whilst that is true for invisibly disabled people without a visible disability, since becoming more prominently visibly disabled people purely focus on the visible aspects of me as a disabled person. Even when I am clearly expressing to them that I am wanting to know something in regard to my other disabilities. 

It is as though people don’t realise that being visibly disabled doesn’t mean that’s your only disability. Many visibly disabled people are also invisibly disabled.

I really wish people would realise visible and invisible disabilities exist together. I wish that people wouldn’t ignore or brush aside my invisible disabilities. I also wish people wouldn’t decide to only focus on my visible disabilities, especially when I am talking about my invisible disabilities. 

I want to be seen as autistic, mentally ill, neurodivergent, as well as being a wheelchair user, and a touretter. 

Don’t make me feel more invisible than I already was.  

Remember that disability isn’t a binary of being visibly or invisibly disabled, many of us do not fit that binary, so please do remember that, and take it into consideration. 


What do you think? Share your experiences now.

 

Replies

  • MandyFoxMandyFox Posts: 8Member Listener
    Hi There, I found your experiences very interesting indeed and I think you do amazingly well with all of your challenges in life. I was thinking, on the one hand, society only seems to accept that you are disabled if there is a visual indicator such as a wheelchair as you said. On the other hand, society seems to discount you as a valid person once they establish you as disabled. Is that what you meant? My friend once said to me that she has become invisible as she gets older as society values youthfulness which I found fascinating. It's a wide topic and makes me sad as there are so many forms of discrimination some of which are very subtle indeed :)

  • DannyMooreDannyMoore Posts: 587Member Chatterbox
    Hi @Tudor,

    I have hidden disabilities myself; Asperger's Syndrome (ASD), two types of epilepsy and learning difficulties. Socialising has always being my biggest difficulty. Because of how much brain damage I have caused by my epileptic seizures my left hemisphere works like a 5 year old's and my right hemisphere works at my age, so most the time half my brain has to do additional work tiring itself out. When it shuts down it makes me behave childishly then people judge and abuse me the the police call it the society having a joke. I've had to pose huge threats upon the police to get them to help me, it was happening this time last year. I had to put the police in the position where they only had two options, either serve me or I'll keep reporting the society putting my life at risk to disallow them to attend other emergencies, life at risk is an emergency.

    Whenever I'm in the society and see unusual behaviour I suspect they have a hidden disability, but I don't take it for granted. I don't like it when people categorize us as if we're all the same, they care less about personality and care more about appearance and reputation. I just view that I know the truth and I'm not so prejudice as they are, it's better to act on what we know is true instead of reacting to assumptions. Since we know the truth about ourselves we know there's nothing wrong about our personality.
    Don't Fear Your True Self
  • mikehughescqmikehughescq Posts: 85Member Whisperer

    Excellent post.

    I have made one of my impairments visible (sight) by using a symbol cane. It's not perfect but it has definitely made my other impairments less visible.

    I still have to explain why I might need a priority seat on a bus (because it's easier for me to get on and off; because my cane is visible to people in front of me; because I can trip if I go up the step to the back of the bus; because I can avoid some of the sunlight in the morning which impacts my Ocular Albinism).

    I also still have to explain why I need an accessible toilet (because I can't always see where I'm urinating if I use a urinal and because I also have an invisible spinal problem which, when it rears up, can make it hard to undress quickly in a small cubicle).

    However, having the cane means that's the only thing that defines me for other people. My hearing impairment is no longer an issue. I could amend my cane to reflect that, and I yet might, but my experience so far is that most people have no clue what a cane means so it seems unlikely to improve things.

  • NystagmiteNystagmite Posts: 387Member Chatterbox
    I agree with you about the cane. I have a guide cane and I've noticed I'm more likely to get walked into if I use it. I've now given up using it. Good thing I have some useful vision.
  • mikehughescqmikehughescq Posts: 85Member Whisperer
    Having a cane does illustrate how little people are aware of their surroundings. I have to say though that I would not be without mine. I use it on public transport and other busy places. I have plenty of useful vision.
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