A piece worth reproducing by Alison Bezzina
In a story of sorts that appeared in today’s paper, a 20 year old woman, who by her own admission looks entirely healthy and fit, felt compelled to complain about people who do not realise that she has a hidden disability.
For some additional irony she complained under a fake name and went on to explain just how hurt she feels whenever she’s told off for sitting in the special ‘disabled’ seats on buses.
It’s not that I don’t know where this woman is coming from, because I do, but isn’t this just one of those things that you’d rather live with, than have things change in any way?
As some of you might have learnt from one of my previous blogs – The Day That Changed My Life Forever ( http://www.timesofmalta.com/articles/view/20110910/blogs/the-day-that-changed-my-life-forever.384154 ) – my 30 year old brother has a mental disabilty, and because he’s big and well built, we’ve had more than a few close shaves with danger.
Unlike a person with Down’s Syndrome for instance, he looks compeltely normal on the outside, so when he nonchalantly walks up to a stranger and touches his beard (his latest fascination), he could very easily get kicked in the face. The same happens when he stares for too long at somebody’s girl, reaches for somebody’s ice cream, or invades somebody’s space.
Do I get angry when someone tells him off? Of course I do, and sometimes I let out a cuss or two, but truth is, I’m dead wrong!
Fortunately, the majority of people do not have a disability, and it’s crazy to expect them to assume that you do when it’s not outwardly apparent. And this is a good thing, because if people start assuming that anyone sitting in a special seat is hiding a disability, no one will ever be told off, and there will never be a special seat available for genuine cases.
The solution is one and only one – don’t be ashamed of your disability, come to terms with the fact that it’s no one’s fault and certainly not yours, and whenever you need to defend yourself by flashing your ID, for peace sake, flash it! Keep it tied to your neck on a lanyard, or somewhere handy, and you won’t have to say a single word. It’s a bright yellow and easily recognisable. Most people will excuse themselves for the intrusion and will probably switch from funny looks to being over helpful.
Unfortunatley, in my brother’s case, the flashing of the card usually comes just after he’s touched a stranger’s shaved head (his second latest fascination), and thus a tad too late, but, honestly, I wouldn’t have it any other way.
Very interesting debate going on here:
The Disability-Research Discussion List: DISABILITY-RESEARCH@JISCMAIL.AC.UK>
I also reject terms such as this.
Coming out as a disabled person is not easy particularly as one is made to feel that having a so called hidden impairment with underlying conditions is either of two things;
You are not really a disabled person, in the eyes or common psyche of the non -disabled world
You are not really a disabled person, in the eyes of the disabled world who just see the barriers as being environmental ones.
For one, I am sick and tired at being looked at when I have to use the accessible toilet facility and I am sick and tired of feeling I have to explain my impairment as a kind of justification for time off to go to the hospital, or feeling a little below par when I am in pain etc etc. I am sure I not alone in this.
It is important to realise that people with hidden impairments face disabling barriers and that it is not the eyes of the non-disabled that matters. What matters is trying to identify the root cause of your ‘malaise’ by continuing notwithstanding the ‘narrative’ of the world of 2011 onwards; that my impairment etc is part of my body but the tiring conditioned responses one gets used to is due to the disabling world.
Message Received: Dec 08 2011, 04:26 PM
From: “Allan Sutherland”
Subject: Re: Hidden/non-visible Disability definition
I object strongly to terms such as this.
I don’t think my impairment should be defined in terms of non-disabled
people’s experience of it.
They are inaccurate: my epilepsy may not be visible a lot of the time, but
if I have a fit I frighten the horses for miles around.
They lump together impairments that have very little in common with one
another. While there may be some logic in a term like ‘wheelchair users’,
which brings together people who may have quite different impairments but
share many barriers, why group, epilepsy, heart conditions, hearing
In my experience ‘hidden disability’ is often a lazy shorthand for ‘all that
other weird stuff we don’t understand and can’t be bothered to find out
I think all impairments can fail to be apparent, depending on the situation.
Thus, a wheelchair user will not be apparent as such when on the phone.
(For this reason, coming out is an issue for every single disabled person.)
Read ‘Neglected Voices’, four cycles of transcription poems by Allan
Sutherland, based on interviews with disabled people.
- ‘Is breaking the law always wrong?’ Alison Bezzina (andrewazzopardi.org)