A recent blog entry was "Why you don't need to be sorry I'm in a wheelchair".
I hoped it would help people see that I don't need pity for using a chair.
Interestingly I had several responses from different people in various places saying "but they were really trying to say I'm sorry you are disabled."
I know that. But from where I sit "I'm sorry you are disabled" is 99% of the time, also very negative and unnecessary.
It's a little tricky to explain, and this only skims the surface, but hopefully it will make sense.
Personally, if, in a disability context, I have said "this sucks", then agreeing "yes, it does" is fine.
In pretty much any other context "I'm sorry you are disabled" - however it is phrased - is not comforting, nice, or remotely supportive.
Consider scenario 1:
You are newly disabled. You have a lot to come to terms with. It's tough. You need emotional support from people you are close to - from people with whom you have the 'This Sucks' conversation. But not from everyone else. You don't want to be 'the disabled one'. You want and need interaction with people who validate you as a person, remind you that you are still part of society, and that there is more to life than disability.
You venture out. feeling vulnerable as your mobility aid makes your disability public and you worry that 'disability' is all that people will see.
And then a stranger comes up and says "I'm so sorry you are disabled".
Well intended, but what is the effect?
For me at this stage, it made me feel worthless. Pitiable. Without use and without future. Making my search for my new future even harder. Confirming that my disability was indeed all people saw, and it overshadowed all my other characteristics - even my humanity.
Consider scenario 2:
You have been disabled for years. You have a pretty good handle on where your limits are, have a stock of aids, adaptations, lifestyle choices and skills that enable you to get on with life. You often aren't conscious of your difference because it is so normal to you. Perhaps you are on your way to work, or perhaps you hare enjoying a special day out. Either way, you are getting on with the life you live.
And then a stranger comes up and says "I'm so sorry you are disabled".
It might be well meant again. But what is the effect?
Personally, I am blindsided. Alice down the rabbit hole. I don't know how to reply.
They see tragedy. I see me living a life I love. The two just don't match up.
I hear this type of comment almost every time I spend a day out and about. A barrage of pity for something that is a) my normal, b) something I can't change and c) doesn't stop me living a rich and full life.
Disability is an ever present part of my life. I can't separate it out. It is here for every positive experience and every negative experience. It is not good and not bad. It is just here.
Everyone has times when things are tough (problems with health, finances, relationships, family, etc). These are a part of being human. Everyone has them. They just aren't always visible to a passing stranger. My challenges don't make me pitiable just because you think you can see them (remember that sometimes people see difference, and assume challenge - when it's not really challenging at all). These challenges just make me human.
How would you feel about constant pity from strangers, in reference to something that is a) very personal, and b) your normal, every single time you go out, for the rest of your entire life?
I realise that sometimes people do feel sad or upset when they see a young disabled person. If you feel that way, please work through it yourself. Pitying me won't help either of us.
I was just finishing this blog post when a disabled friend (S) called for a chat. S had had a wobbly day and a woman had helped her out. She wanted to be supportive. After a brief conversation about S's disability, she stated "It's a tragedy". "Um...no actually, there's lots of nice things in my life..." The woman replied "No. It's a tragedy, you're so young, it's tragic." - and then left to answer a phone call.
How could a complete stranger see one small part of her life, and write the whole lot off as a tragedy? - How could someone be so completely unable to consider the possibility that S's life was good?
We chatted. It's such a common occurrence. And very, very unpleasant. How can we deal with it? Doing nothing means they will carry on with that behaviour, believing it to be 'showing support'. Being aggressive won't get the message across as they will think I've misunderstood their 'supportive action'.
Based on an idea from S, here's what I'd like to say next time:
I hoped it would help people see that I don't need pity for using a chair.
Interestingly I had several responses from different people in various places saying "but they were really trying to say I'm sorry you are disabled."
I know that. But from where I sit "I'm sorry you are disabled" is 99% of the time, also very negative and unnecessary.
It's a little tricky to explain, and this only skims the surface, but hopefully it will make sense.
Personally, if, in a disability context, I have said "this sucks", then agreeing "yes, it does" is fine.
In pretty much any other context "I'm sorry you are disabled" - however it is phrased - is not comforting, nice, or remotely supportive.
Consider scenario 1:
You are newly disabled. You have a lot to come to terms with. It's tough. You need emotional support from people you are close to - from people with whom you have the 'This Sucks' conversation. But not from everyone else. You don't want to be 'the disabled one'. You want and need interaction with people who validate you as a person, remind you that you are still part of society, and that there is more to life than disability.
You venture out. feeling vulnerable as your mobility aid makes your disability public and you worry that 'disability' is all that people will see.
And then a stranger comes up and says "I'm so sorry you are disabled".
Well intended, but what is the effect?
For me at this stage, it made me feel worthless. Pitiable. Without use and without future. Making my search for my new future even harder. Confirming that my disability was indeed all people saw, and it overshadowed all my other characteristics - even my humanity.
Consider scenario 2:
You have been disabled for years. You have a pretty good handle on where your limits are, have a stock of aids, adaptations, lifestyle choices and skills that enable you to get on with life. You often aren't conscious of your difference because it is so normal to you. Perhaps you are on your way to work, or perhaps you hare enjoying a special day out. Either way, you are getting on with the life you live.
And then a stranger comes up and says "I'm so sorry you are disabled".
It might be well meant again. But what is the effect?
Personally, I am blindsided. Alice down the rabbit hole. I don't know how to reply.
They see tragedy. I see me living a life I love. The two just don't match up.
I hear this type of comment almost every time I spend a day out and about. A barrage of pity for something that is a) my normal, b) something I can't change and c) doesn't stop me living a rich and full life.
Disability is an ever present part of my life. I can't separate it out. It is here for every positive experience and every negative experience. It is not good and not bad. It is just here.
Everyone has times when things are tough (problems with health, finances, relationships, family, etc). These are a part of being human. Everyone has them. They just aren't always visible to a passing stranger. My challenges don't make me pitiable just because you think you can see them (remember that sometimes people see difference, and assume challenge - when it's not really challenging at all). These challenges just make me human.
How would you feel about constant pity from strangers, in reference to something that is a) very personal, and b) your normal, every single time you go out, for the rest of your entire life?
I realise that sometimes people do feel sad or upset when they see a young disabled person. If you feel that way, please work through it yourself. Pitying me won't help either of us.
I was just finishing this blog post when a disabled friend (S) called for a chat. S had had a wobbly day and a woman had helped her out. She wanted to be supportive. After a brief conversation about S's disability, she stated "It's a tragedy". "Um...no actually, there's lots of nice things in my life..." The woman replied "No. It's a tragedy, you're so young, it's tragic." - and then left to answer a phone call.
How could a complete stranger see one small part of her life, and write the whole lot off as a tragedy? - How could someone be so completely unable to consider the possibility that S's life was good?
We chatted. It's such a common occurrence. And very, very unpleasant. How can we deal with it? Doing nothing means they will carry on with that behaviour, believing it to be 'showing support'. Being aggressive won't get the message across as they will think I've misunderstood their 'supportive action'.
Based on an idea from S, here's what I'd like to say next time:
"I know you are trying to be supportive, and mean well, but my life isn't a tragedy - it's just different. Everyone has challenges, and my life also has many good and happy things. There is no reason for you to feel sorry for me, so please stop. Please just stop."
So if you ever get the urge to say "I'm sorry you are disabled", please stop and think:
Will a pitying phrase have a positive effect? - If the answer is no: Don't do it.
Instead, let us get on with enjoying the lives that we live.
So if you ever get the urge to say "I'm sorry you are disabled", please stop and think:
Will a pitying phrase have a positive effect? - If the answer is no: Don't do it.
Instead, let us get on with enjoying the lives that we live.
Interesting item. But have you considered that it's maybe not YOU who "has the disability"? http://www.xojane.com/issues/i-am-not-a-person-with-a-disability-i-am-a-disabled-person
ReplyDeleteI get your point, but personally I see myself as both disabled having disabilities, depending on the context. Either way, my disability is not a problem. Various attitudes and situations and barriers can cause problems, but I don't see my disability as a problem nor the cause of problems :)
DeleteTragedy is word which is so over-used and incorrectly used; it's ignorance of the correct use of language across the board.
ReplyDeleteI didn't reply to your previous post because I couldn't quite get it straight in my head, but this post has definitely helped straighten it out. I haven't yet had quite this sort of experience because my disability is not often obvious, but I do have to often reassure people when it comes up in conversation that I actually am okay with it and that my life is still pretty good.
ReplyDelete'I'm sorry you're in a wheelchair' is sometimes a clumsy way of saying 'I'm sorry you have impairments that mean you need to use a wheelchair'. Even if it's not, it's usually rooted in 'I'm sorry you're suffering', which is a perfectly human response, and indeed generally appreciated for temporary situations. The problem is that when it comes to disability, well-intentioned people often vastly overestimate how much the disabled person is suffering* - or perhaps have absolutely no clue, but view the suffering as that person's entire life. (*I do mean 'suffering', distinct from 'impairment/s')
HOWEVER, good intentions do not excuse rudeness - when well-intentioned people (such as those mentioned in your posts) refuse to accept that a disabled person's life is in fact a LIFE, not pure tragedy and suffering, well that's plain rude. It might naturally be really hard for them to understand, but that does not make it okay to simply refuse to consider something other than their own view, and absolutely NOT okay to contradict someone about that person's own experience of life! (And it's pretty much offensive if they repeatedly contradict, such as the guy you mentioned in your last post.)
Your conclusions in this post are brilliant. "I know you are trying to be supportive, and mean well, but my life isn't a tragedy - it's just different. Everyone has challenges, and my life also has many good and happy things. There is no reason for you to feel sorry for me, so please stop. Please just stop." <- this is just perfect! In fact it would make an excellent keyring card.
And this: 'If you ever get the urge to say "I'm sorry you are disabled", please stop and think: Will a pitying phrase have a positive effect? - If the answer is no: Don't do it. Instead, let us get on with enjoying the lives that we live.' <- this would be amazing for little business cards to hand to people who earn themselves a reading of the above (hypothetical) keyring card ;-)
I hope that made some kind of sense. Anyway, great couple of posts!