About a year ago I was asked a question "Do you consider yourself to be disabled ?"
I took me a while to answer as it was such an intriguing question that I have been pondering it and the question of how do we class ourselves ? Like most of us I am in the limbo world of not being fit for work but not receiving any medical treatment. So are we injured, ill or sick or well ?
I have trouble reconciling both of these as both injuries and sickness normally have a treatment plan and high rate of recovery.
It is like the question on being disabled, it isn't that we can't do things, we can do things sometimes well, sometimes slowly, sometimes - you get the picture.
Professor Stephen Hawking has a better brain than most of us put together and the paralympic amputee runner Oscar Pistorius can run 100m in a time that most of us coudn't even do our shoe laces in. Whilst none woud argue that they aren't disabled it does pose the question on that absolute label "disabled"
Whilst no one wants to be labelled or pigeon holed, I find really difficut to find words amongst the thousands in the English dictionary that describe us.
How do you class yourself - sick, ill, disabled or something else ?
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sospan
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I have finally become used to being classed as disabled yet find it hard to quantify it.
Yes I suppose I am put into the pigeon hole called disabled.
Yet I am still taken aback by people reactions when the exclaim " oh so you ARE disabled then". Yes I know I can appear " normal " but find I feel I must get disabled engraved across my forehead.
My more recent reaction to this statement is " No I am just me"
After all everyone can not do everything , therefore there is sone we all cannot do. So therefore we are ALL disabled in some way.
My viral encephalitis has left me with disabilities that I have to manage on a day to day basis.
A lot of the time I can function almost as well as I used to, but I have chronic fatigue, visual problems, some short term memory problems as well as fine motor problems. None of these things can be seen by looking at me and although I have these problems they are mainly physical.
Intellectually I am not affected but, I am disabled.
I don't have any issues saying that or telling people. So I would also say I am sick.
In the eyes of most governmental organisations, the NHS, etc, I'm disabled. Makes no odds to me, I really don't care. I wake up in the morning, look in the mirror, and see... me. Older, definitely wiser, sadly greyer and still tired. But, still me.
Ill? Yep, Disabled, I suppose so. But the important thing is I really don't give myself labels. If anybody asks, I simply say that I don't work as I suffered a brain injury. That's it really.
Personally, I think everyone on planet earth is disabled because we are not all able to do the same things.
Some people can swim, others can't. Those that can't are disabled in swimming.
I am not ill or sick. If I was either, then some kind of virus would have taken over my immune system. Also a person can RECOVER from a sickness/illness.
I stress the word 'recover' because I have seen it used so many times when referring to brain injury. My brain has been injured for over 20 years now. I believe it is healing very very slowly but I don't feel I will ever recover from this injury, not in my lifetime.
Might sound a tad negative but it is truth and I accept it to.
I think disabled needs to be stuff most people could do, people clearly differ in abilitys my ability to map a area and see in my mind is off the scale, folks who can't aren't disabled I'm a outliner for that sort of stuff.
I agree that recovery is clumsy term and hints at full return rather than getting to 80-90% even if it's very mild.
Not really Sospan because I can still do most things, just slower or less ably. So is there a word for reduced ability ? I suppose it would be 'Cognitively and physically challenged' ............................ but I prefer to just say 'I'm OK'. xx
3 years ago I was in a coma and suffered hypoxia I have been told I will never work again as I suffer from short term memory loss and bouts of confusion. After working 30 years it was hard to take and I still refuse to accept I am disabled although it's obvious I am
I didn't think of myself as disabled until I could walk up Staithes Bank ( very steep) Nr Whitby and an old dear (sorry if that offends ) said if I wait she would get her car and take me to the Cafe at the top of the Bank which she did
as an aside I have nothing but kindness from folk here in Yorkshire when I have had problems
I can't even begin to think about it......I've been asked a few time since my accident and I find it impossible to even consider, especially when 'put on the spot' by interested acquaintances. I don't think if ever ask someone 'So are you disabled?' , so it comes as a surprise when someone stops me in the street and says that. Having to answer the questions to complete forms to claim benefits is very odd indeed - it's maki g making me think the answer might be yes? Who knows? I can now walk a very long way and I've almost stopped falling over so it seems hopeful in many ways.
That's a great question and I've never really thought about it, I went on a sports leadership course and one of the questions was do you class yourself to be disabled or something like that, I put no but at the side I wrote 'I've got a brain injury' or something like that, not exactly sure what I put as it was in february,
on paper I say no I'm not but write at the side I've got a brain injury but to people's faces I will say that I'm permanently disabled due to a brain injury and a lot of people don't believe me, they are shocked to find out how I had my accident and then they have a look almost to say I've got to change my life or do something about my life before it's too late,
I suppose my answer changes to who I'm speaking to, if it's a doctor that has never seen me before or doesn't know about my head then I will usually say I'm permanently disabled due to a traumatic brain injury but if I'm on a course I will either pull the teacher to the side and tell them face to face or write it down on a form that I know the teacher will go through and will read what I wrote, as if I tell people about my TBI I get treated differently by a few like I'm going to be really stupid and clumsy but majority don't treat me any different, people would get annoyed at me because I struggle communicating face to face and can't keep eye contact for long if I can see them getting more annoyed at me then I explain why I struggle then they are much more patient with me.
I'm not sick or ill and as for the disabled label I hate it cos I can do anything I need to..... It's just that it takes ages and lots of breaks or I pay the price in terms of speech balance and those headaches.
How about "survivor dealing with the consequences".
Were you asked this question by a clinical person or a civilian ?
It's just that only a few people over the years have asked me about my disabilities. I hobble with a stick so my physical problems are obvious, when I move that is. Brain injury is not mentioned unless someone asks me questions that tax my memory and even then I might make a light hearted comment about being a scatter brain or swiss cheese memory or something odd and faintly jokey.
But to a clinical type I might trot out the few neuro clinical words that my mind has clung onto over the years. "Post taumatic amnesia, GCS 3, coma, induced coma, muscle wastage-shortening, hyperextension, inversion, MRSA, balance damage, berg balance scale, etc.
I do think of myself as disabled in an official paperwork sense because that's what the system classes me as. Although "I am just me" or "I'm a human being" is how I think of myself. (although if someone caught me launching a loud tirade of colourful words at myself for a minor mistake they might think I hate myself)
I now feel that I'm waffling and have actually forgotten the question. Can't bring myself to scroll up for a reminder coz that's not what I do. Well, sometimes but not at 11.30pm on a Wednesday. Coffee has been consumed and I be pinging away with a caffeine head.
I am. I have diagnoses of MECFS, FND, and an unruptured aneurysm. Because of how my life and capabilities have changed since 2009 I consider myself to be disabled. But then and again, sometimes I am not.... not always.
So not right now, because I am 4 weeks in to one of my lovely remissions: Dick the stick has been banished; My scooter is languishing in the outdoor shed; and bar the continuing memory lapses and word finding struggles ( which remained oddly present during my last major remission too) you would be hard pushed to find much wrong with me.
But, as I know from my last experience 3 years ago, suddenly, within 5 minutes, and without warning after a fantastic 14 weeks of 'health', I can find myself in an instant again suffering with spasticity in my legs, vertigo, and extreme fatigue that leaves me unable to walk, completely stranded, calling my other half to come and rescue me...
I hope and pray that this time something has clicked back, that I won't relapse, that this is the 'new new me'. Experience tells me that I may not be so lucky. But like the brain aneurysm I have no way of knowing when, whether, or why....so I will just carry on enjoying the remission. But despite the health, the obvious lack of anything currently wrong with me, unless I am still feeling like this in 12 months time (and the last 7 years suggests that is highly improbable) then yes, I am indeed disabled.
Of course none of my declared diagnoses are meant to involve remissions and relapses like this. So it is interesting....
I have never thought of its like that its an interesting question. I was talking to my mum and dad on Friday and it was an interesting conversation as I was trying to explain what I go through thing to understand the emotion and love thing that I don't have anymore. I used to but its now gone so you could say I'm disabled in love and emotion. Funny though because I described my accident in that if id have broken my arm or leg you would SEE the injury and then see it heal and it would be forgotten. I injured my brain, my brain bled no one saw the physical effect of the accident well apart from my back being in agony but thats getting better. An injury you can't see seems fine but its not.
It was difficult to talk to them but talking to them really helps them and me. And I have to be honest too.
So to answer the question am I disabled? I don't think I am but if being a bit slower sometimes in my thinking and having trouble with cognitive issues or struggling with words due to my brain injury makes me disabled then I am. N
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