Why does everyone have an opinion on what it must feel like to be disabled? — Scope | Disability forum
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Why does everyone have an opinion on what it must feel like to be disabled?

Alex_Scope Posts: 7,562 Scope online community team

Disability Pride Month occurs in July, created to listen to what the voices of disabled people have to say about their rights and what they need.

So why is it that so many people assume they know what it's like to be disabled?

Scope ambassador Samantha Renke recently spoke about her experiences in an article for the Metro, and the ways in which society 'disables' people. 

You can read some excerpts below, or click the link to read the article in full:

If I tell the world that I’m happy and love my disabled body, I can often be met with scepticism, disbelief or ableism.

I’ve had someone tell me before: ‘You can’t be happy and disabled’, or: ‘You should strive to overcome your disability'. Then there was the person who flatly said: ‘Disability must be bad because if I were like you, I’d rather die!’

We aren’t allowed to have a bad day or – dare I say – not be a very nice person because we are often infantilised and depicted as angelic ‘vulnerable’ individuals.

I'd like to know:

Can you relate to Samantha?

Have you ever had someone assume what living with your disability or health condition must be like?

Why do you think people make assumptions?

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  • 66Mustang
    66Mustang Community member Posts: 11,970 Disability Gamechanger
    I can relate to being infantilised as often I don’t feel able to speak, especially to strangers but also to less close relatives and family friends, and I sometimes get spoken to a bit like a child.

    To be honest I don’t like to complain as I’m grateful that they try to make an effort but I think people do need to realise I do in fact understand the “adult speak” that’s going on, I just don’t feel able to join in!
  • Steve_in_The_City
    Steve_in_The_City Scope Member Posts: 497 Pioneering
    edited July 2022
    In 2000 I went down with an unusual illness. I had no idea what was wrong with me and in 2004 I had to give up my business (that I loved). My illness isn't recognised in this country and I can't be diagnosed. I had to go for a government medical. I expected to fail due to the lack of medical understanding but the doctor who examined me told me his own sister had the same illness and had to give up her business. This was fortunate for me as the doctor understood my situation and I was placed in the Support Group. I then had to have the odd re-assessment but I was left in the Support Group. In 2007 I was declared severely disabled, this being a legal term and not a diagnosis. The illness is invisible and physically I looked fine. But I met with a lot of hostility from people who thought I was mentally ill. These comments really got me down. I also found it difficult to make my partner, friends and family understand and there were many arguments until the people closest to me understood that my illness is real. So I hope that disability pride week will also consider those of us with invisible disability. I was met with a lot of hostility. I was told it was all in my head and that I was making it up so I could live on benefits and avoid work. Nothing was further from the truth and I no longer discuss it with anyone except people on a forum that have the same illness as I.

    In 2016 I had a serious accident that left me unable to walk and clearly physically disabled. When I go out I am on my mobility scooter or tri-walker. No-one has ever made any negative comment to me and I am sad that Samantha has had to tolerate such a level of abuse and misunderstanding.  I also feel bad for Mustang66 being spoken to like a child. I have never had the type of experience that Samantha and Mustang66 relate. If I did I would be upset. I have nice conversations with people everyday and people just seem to accept me. When I first became physically disabled I did resent the fact that people were too helpful! They would ask if I needed help with unloading my shopping at the supermarket checkout. I would say no but they would unload it anyway. I wanted to say I am disabled, not useless - but I never did and eventually I realised people were just being kind and helpful so I no longer let it get to me.

    I suppose that the point of my missive is that I found my invisible illness very difficult to deal with because of the negative response from people around me, who had no idea what I was going through. My physical disability is easier to deal with socially and emotionally as I have never been discriminated against. To answer the questions poised: I cannot relate with Samantha as far as my physical disability is concerned. No-one has ever assumed what living with my disabilities is like. I think people make assumptions due to their own prejudice and misinformed belief system.
  • Middleton
    Middleton Community member Posts: 130 Courageous
    I am disabled...and ive met often met people that seem to hold the opinion, youre kind of having a vacation they arent having.. Resentment !  We can deny this, but its a fact!... Unless you meet very understand empathetic people, that DO accept your ailments , youll have a rough ride from general folks.

    Even Drs/Specialists.. In their subconscious ,they have the worst case scenario as a benchmark, and unless you present a classic case, it takes alot of faith on their part, to persist in trials to find out exactly what is 'Your' particular illness and variant.

    In a nutshell, unless someone is so obviously injured and the room for doubt is removed...Youre always going to come across 'some' people that look at you with some type of disdain.

    Paranoid?  Nope!... ive seen it time and time again.. Friends walking, struggling towards to shop  from their car(the one time that month theyve managed to get out and mildly function) and people literally scanning thenm up  and down and even people shaking their heads...because the disabled person is walking from the disabled bay..

    I use to live near the town where the man was killed with one punch ,in Asda car park. He had driven his disabled wife to the shops, gone back to the car quickly to gab something . And a disabled driver(of all people) was looking to park and started shouting at the guy to move and why had he parked there.... 

    Its evident even disabled people can be judgemental as the disabled driver began berating the guy and asking why he was parked there...Long story short...One punch..and the poor guy whos disabled wife was in the shops, died later on in Hospital.

    When society becomes evem more stretched (fuel,energy,food costs etc) youll start seeing what people really feel towards the disabled...

    In my opinion and experience, it sucks to be disabled on so many levels.
  • 66Mustang
    66Mustang Community member Posts: 11,970 Disability Gamechanger
    @Teddybear12 usually no pressure, no. It's left up to me, though, I think they notice I'm not joining in.

    I don't like to speculate as I'm then the one guilty of making assumptions, but I think they see I'm not joining in and think perhaps I don't understand what's being said or even think that I'm a bit "simple". As I said, though, I do appreciate that they see something is up and make an effort to get me to join in. As my father would say their heart is in the right place, just their head isn't.


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