Guardian: "People accept that I’m gay, but not that I’m disabled"

Andy

Andy

Retired committee member
.......
I don’t think my family expected me to be one way or the other, so being an out lesbian was probably the least interesting part of my teenage years.

Being aware of my disabilities was also gradual – I had a lot of problems with my hearing as a baby, including my eardrums bursting on a number of occasions. After a few operations on my ears and eardrums, I was able to hear relatively well from the ages of five to 15 – so the songs I know best are, sadly, very late-90s/early 00s – although adults often complained that I was “dreamy” and “not listening” when I realise now I just couldn’t hear them. I started to lose my hearing again at 16, but didn’t realise it until I began university three years later.

It seems funny to think that I didn’t realise, but I was struggling with a lot of other health problems at the time and as I spent most of my time in bed – either at home or in hospital – the only thing that noticeably changed was the volume at which I watched TV.

When I finally managed to make it to university and started interacting with people who were not my immediate family, it was painfully obvious that I couldn’t hear what they were saying and that, when it came to conversation, I had pretty much been operating on guesswork for quite a while.

I am not profoundly deaf and, obviously, can hear more with my hearing aids in, although they only make things louder, not clearer. I can’t hear any high-pitched sounds and, with my hearing aids in, I only properly catch one word in three.

When I was 17, I was diagnosed with hereditary neuropathy with liability to pressure palsies (HNPP), which results in extreme palsy in my arms as well as patches of skin being numb, difficulty gripping things, weakness in limbs and severe fatigue. I also have mixed connective tissue disorder (MCTD), an autoimmune disease in which the body’s defence system attacks itself. MCTD causes chronic joint pain, muscle inflammation, hypermobility and pulmonary hypertension alongside a long list of other symptoms.
Click to expand...
https://www.theguardian.com/lifeand...e-accept-that-im-gay-but-not-that-im-disabled
 
ArtStu said:
I would never describe myself as disabled, ill yes, I wonder if a poll would reveal anything interesting about the ratio between those who describe themselves as disabled and those who describe themselves as ill ?
Click to expand...
I have never described myself as disabled either. Even though I don't think of myself like that, I think I'd probably qualify. I'd certainly take a disabled parking permit if one was offered, and use it, because the walk from my parking space to the classroom is something I could well do without when I go to work. It would probably be fairly pointless though, because by all accounts the energy saved by not having to walk would be spent arguing with idiots who think they know all about you just by looking at you.
 
I, nowadays, look at in a different light. Am I as able as the majority of the public? The answer is clearly no, so I'm "happy" now to think of myself as disabled as it's clearly logical to do so. For me, accepting that as my label meant that I took some pressure off of myself to achieve the same as more able-bodied people. But I totally understand that this will be deeply personal thing to accept, or not and that we will all have our own personal opinions on it.
 
In my experience some people seem to assume those with a disability have a fairly static or stable condition. Someone wheelchair bound with a spinal injury perhaps. Obviously there will be health complications due to that but, assuming those are managed, the condition and abilities of that person are fairly stable.I

Then the perception seems to be that people who are ill are either temporarily ill, such as with a bad flu or something, and recover. It with a potentially life threatening illness who either die or recover.

What seems to be ignored is that some people are, in effect, both. I reluctantly have to accept that I am disabled as I clearly cannot carry out tasks and live as a "normal" person of the same age. I accept that I am I'll because the condition is ongoing and fairly unstable. The reason I am not receiving treatment is purely because there isn't an effective one.
 
For me, this issue is a matter of semantics -- how one defines the meaning of a word. I have referred to myself as either ill, or disabled, depending on the situation.

Based on recent articles I've been reading, it seems "disability awareness" may be one of the top news stories of 2018. I've seen many references to the ratio of people living with at least one disability. Here's an older example that provides a broad definition of disability:

CDC: 1 in 5 American adults live with a disability

https://www.usatoday.com/story/news/nation/2015/07/30/american-adults-disability/30881975/

It states: "The researchers defined a disability as a self-reported difficulty in one or more of five areas: vision, cognition, mobility, self-care or independent living."

Here's a more current article, also from the Guardian:

www.theguardian.com/commentisfree/2018/jan/11/disabilities-are-not-always-obvious-dont-judge-us-without-knowing-the-full-story

The subheading: "In any public place, it may surprise you to look around and consider that one in five people have a disability. Many engage less with society than they would like"

Although this article primarily focuses on the more narrow "physical" definition of disability, it does provide some interesting insight into the effect of disability on perception (self, and others).

"How we see ourselves and how we are perceived by others is very closely linked. Awareness of the impacts of invisible illness is growing, and much is being written on the topic by those who endure it and by health professionals. But we have a long way to go before our community understands that we are surrounded by people with invisible illnesses and disabilities."
 
You must log in or register to reply here.
Back
Top Bottom