I get a number of letters asking questions of me, most are from professionals who want advice to help an individual, an uncomfortable number are from students wanting me to write essays for them, but some are for more personal advice. I've excerpted from a letter, with the permission of the writer, here in this blog. It needs to be clear that I only cut the letter in half, the first half was more about my blog and having found it and such. This part of the letter is intact and not altered or edited by me:
I too have been forced to adjust my life, as I have a degenerative muscle disorder in my legs. I'm not in a chair yet, however I will be at one point. I currently walk with two canes and have had to grow used to stares and comments as well.
One thing this has enabled me to do is to have a better understanding of how the people I work with have to learn to cope with everyone around them. No wonder some have "behavioral problems". I do too.
I refuse to get a disabled sticker on my vehicle, much to the chagrin of my family. I don't see myself as disabled, funny how that works. I don't want to get the sticker as then I've got the label. What is your view on this?
Is this just stubborn of me? Or is there in your view a pointless issue that I'm making?
I'm always shy of answering emails that really are about a person's sense of themselves as a human being. I'm not sure I have a right to enter into that discussion, particularly because, as you shall see, I have strong views. But then, I'm invited in, and by courageous permission of the writer, you are too. It seems after two blogs in a row about disability, pride and shame, disability out and proud versus disability lived in whispers, now was the time to publish a comment here.
Firstly, I have to say that when I meet people with obvious disabilities who deny their disability, I find that non-disabled people applaud this with a 'go you' kind of cheer. I don't. I feel immediately kind of insulted. It's like by not wanting to accept the 'status' of disability one gets to keep one's former 'status' as able. This is perceived as a very good thing, holding on to what is valued and rejecting that which is devalued. The number of people with disabilities who eschew membership in the 'disability club' is enormous.
Every time a person with a disability who says, 'I don't consider myself disabled,' they usually have a reason to go along with that - they are fully employed - they are active in sports - they have personal accomplishments. This goes to prove that they aren't 'one of those'. They reinforce two stereotypes, first that disability is so bad that even the disabled don't want to be disabled. And second that disabled people aren't, make the list, employed, athletic, accomplished. They may win approval from their non-disabled friends. I'll bet behind their backs they are described as 'plucky' and 'courageous' and 'inspiring'. Non-disabled people love to be reinforced in their value by the desperate need for membership in their numbers by those who 'poor dear's' don't belong. They love to grant a 'wink wink' membership to us - the others, the lessers.
I also take exception to the idea of 'disability' as a lable. It is no such thing. Disability is. My friend Sheila is not 'labelled' a woman. My friend Ian is not 'labelled' as black. My friend Wendy is not labelled as gay and if you said that to him it would piss him off. We are who we are and we should be who we are proudly. I AM disabled. I AM gay. I AM fat. Those are descriptors of me, not labels placed upon me.
I'm not sure what 'point' that the letter writer is making by not getting a disabled parking badge. But the point probably isn't what he thinks it is. This kind of behaviour perpetuates disability shame, it allows others to view disability as a lesser way to be. Disability pride, however, disability identity in particular, declares simply that disability is another and EQUAL way to be.
Coming out to oneself as a disabled person is a huge step towards self acceptance and a giant step in confronting societies attitudes and prejudices. Adopting a 'yeah, I'm a crip, deal with it or get the fuck out of my way' attitude is hugely beneficial for a successful life as real live living human example of diversity. I know this I am plus sized diversity ... got multiple fronts to face prejudice ... and I warn you it gets tiring.
But no where near as tiring as keeping up pretense. Living a lie is no life to live. This, right now, this time, this body, this way of movement, it's what you got. Well, get it. Take it.
Stevie Wonder in an interview was having trouble getting his point across to an interviewer who just wanted to talk about his music. With every question the interviewer brought up the issue that he was blind. He wasn't in blind denial, he just wanted to talk about and maybe even sell some discs. Finally she asked him what advice he'd give to those who were blind. By now he was frustrated and he blurted out: 'My advice? Be Blind, Just Be Blind, That's What You Are, So ... Be Blind.'
That's brilliant advice.
And that's my advice to you.
'Be disabled. Just Be Disabled. That What You are So ... Be Disabled.'
I like this post.
ReplyDeleteMy advice about the permit: If the asker thinks it would be helpful to have the permit, they should get one. If not, they don't need to get one.
Also, I think: if you get a permit, you can choose to not use it, or only use it sometimes, or not use it "yet." You can park in the back of the lot every day, if you like. But if you don't have a permit, you can't use it when it would really be helpful, even if those days are rare.
The way I see it...the reality *is* that I have physical disabilities. It doesn't make me any better or any worse than anyone, or any less deserving than anyone, but it does have practical implications for my life that I can't deny...so I don't. My disabilities are a part of what defines me as person, they're just not the whole of it.
ReplyDeleteGreat post. It took me a long time to get to be as comfortable as myself as a person with disabilities as I am, and I know that a lot of people struggle with getting to that point.
Great advice from bookselves, by the way.
ReplyDeleteI agree, Dave, and I think you put it very well.
ReplyDeleteIt sounds like the letter writer feels that not accepting accommodations is something to be proud of -- which comes from the mentality that accommodations represent "special help" instead of equal access, and that refusing "special help" means you have a strong moral character or something.
I also agree that not wanting to be called disabled is somewhat offensive to other disabled people, since it's like saying the identity means unflattering or undesirable things about the person.
But I also want to say that I sympathize with the letter writer, and that most people go through a similar process with identities that are disadvantaged in society. We've grown up internalizing all of these negative messages about disability and what it means, and it's understandable that people resist calling themselves disabled. While I agree that it's a somewhat offensive attitude, I think we also have to have compassion for people going through this process because they are oppressed too, and they are struggling with self-acceptance because society does not completely accept them.
I, too, tend to feel offended when someone acts as if pretending to not be disabled somehow makes you a better person. As if having a disability somehow made you a BAD person. Excuse me. I happen to think I'm a great person the way I am, multiple disabilities and all. No, my disabilities are not all of who I am, but they do have important implications in my life--some not so great, but also some positives as well. They have shaped my daily experiences since I was born and, thus, are one part of a very large list of things that have helped shape who I am today. And since I happen to like me the way I am, then I don't see how I can possibly embrace myself, truly and wholly, without also embracing my own disabilities.
ReplyDeleteAt the same time, I respect what CL says about recognizing that perhaps for some newly disabled people it is a necessary phase to go through on the journey to acceptance.
What CL says reminds me about a wksp I attended that explored the process when one becomes diabled and there's not alot out there that talks about that. I know for myself when I was diagnosed with sleep apnea I resisted using the machine that could help me breath....it was a hard process....it was uncomfortable, I took it off in my sleep. I said outrageous things about preferring to die than to use it....and I talked about it and found out I had several friends who had the same condition that I have and listenned to their experiences and asked questions and eventually I kept trying the machine and then got used to it and now happily put it on every night knowing it supports me and I'm not so tired....didn't have any dramatic change that some experience except I know it's helping my heart and my life. I knew this was a small step in my changing body and was nothing compared to having a different diagnosis. In my head I knew how it could/should be but my own process had to catch up to what I knew. I think there's grief of the loss of ability and I can identify my shame which isn't something that's comfortable and I can also see movement to say this is who I am now and it's ok and I can welcome someone else into the world that is different and still be ok and hopefully I can take this experience when the next change happens.
ReplyDeleteDave you have talked many times about discrimination you and others experience based on your disability. Perhaps the letter writer doesn't necessarily think badly of disabled people themselves, but knows that some others think differently, and wants to avoid this? For example, if someone was gay, they may not want to come out due to fears of others' prejudice and discrimination, despite being happy and comfortable with their sexuality themselves. This may be particularly extreme in certain communities or in the past. Also, if there is a loss in becoming disabled, e.g. not being able to do certain things you did before, or not being able to do them as easily, is it not understandable for the person, at least initially, to see this as a "bad" thing which has happened in their life?
ReplyDeletep.s. not related to this post really, but I have been wondering for a while why "crip" is OK and "retard" is such a negative word. Dont get me wrong, I agree about the R word, but personally, and I dont know if living in the UK has any effect on my perception of words, hearing the word crip or cripple makes me cringe a little too. I am assuming this is a word used within the disability community, 'reclaimed' as it were as something positive, in the same way that black people might call each other the N word?
Rebecca
I do not have a disability, so I do not see this from the same perspective as you do, Dave. But I'm taking a shot here anyway. While I do see the offense in her saying "I don't see myself as disabled" I would bet that she is on a journey to acceptance and has encountered a little roadblock with the disabled sticker. Perhaps she thinks she's OK with everything and then she comes to this and realizes she's not, hence her email to you.
ReplyDeleteI have two children with disabilities. The experience with my son with Asperger Syndrome has been similar to the writer's. Early on I did the typical mourning for the child I thought I would have, accepted his differences, and thought I had moved on. But at different times over the years I have been surprised to find I need to mourn yet again as I make certain realizations ... my family dynamics are not always pretty, we will never participate in certain activities, my son as an adult can be way more challenging than as a little boy.
But with my daughter with Down Syndrome, my feelings are similar to yours. When parents act like putting their child in a special needs school or class (as I have) is just unacceptable, or put up the cold shoulder when I try to connect, I am offended. A woman even said to a group of us, "I don't want to be part of your club." While these things are hurtful to me, I assume (perhaps wrongly) that in their own way they are still hurting from their child's diagnosis. I don't like the phrase "in denial", but that's what comes to mind and I try to feel sympathy for them.
Whew, longwinded, hopefully not offensive, and I will submit before I overthink and delete.
Such an interesting conversation. Thank you.
ReplyDeleteSometimes, just sometimes, I wish that I looked disabled so I wouldn't have to explain EVERY time, so I didn't have to make people feel sorry for me so they'll do what I've asked even though it's "completely against protocol" or "not the normal way of doing things" or whatever other reason they feel like telling me today :(
ReplyDeleteIt took me a while to accept being disabled because I was expecting to recover and I didn't feel I qualified! It has made a difference to my attitude and to my life accepting the term and Becoming Disabled years after my accidental head-injury :)
Once again I am going to say something that might get me slammed. I tend to shy away from being identified as "disabled" too. But before anyone yells. Let me explain. Several years ago I had a job at a Center for Independent Living. CILS are wonderful when they run well. I have no issues with the fact that I have a disability I like me and wouldn't choose to be any other way if I could. I would chose to drive but that's a whole other post. The reason I resist things like the placard or things to make my access easier is because of my own personal experience in working with the majority of consumers at that CIL. And in my work now as a service dog trainer
ReplyDeleteThe majority of people in my non online "disability community" are bitter people who thinks the world as whole owes them a cookie because they have struggles. They are mean nasty rude and entitled. So when I am out in public in my own area. People assume that I am also going to be mean rude and entitled when asking for assistance. Its a look that comes over people when they see me and my scooter. OMG here comes one to complain. I'm not saying that sometimes their aren't reasons to complain sometimes. But and I've chanted this many many times on my own blog, everybody MUST take responsibility for their behavior. That seems to be lacking from the disabled community in my area. SO I tend to shy away from that "label". Now If I could hang out with Dave and the people who frequent this blog in RL then I think I'd feel better about that identity in a group. :)
"Perhaps the letter writer doesn't necessarily think badly of disabled people themselves, but knows that some others think differently, and wants to avoid this? For example, if someone was gay, they may not want to come out due to fears of others' prejudice and discrimination, despite being happy and comfortable with their sexuality themselves."
ReplyDeleteBut whether or not he uses the disability placard, everyone can tell he's disabled when they see him walk. He'll get the negative reactions whether he admits it or not.
"adjusting"
ReplyDeleteI tend to put people into mind-drawers; black people, gay people, disabled people, old people etc...
It is easier that way to sort your thoughts and to deal with the world. Philosophers say that we have a picture/image of "the thing" in mind, when we hear it. For instance a cup could come in all colors and shapes but everyone of us has an idea of a cup in his head if he hears the word. Or for blind people a feeling or for deaf people an image and a sign.
We all do lable at first. Well maybe not all of us but I do.
So we have an image burned into us how our life, our bodie or other things should be, look and work.
In certain societies certain abilitys are requiered, wished for and rewarded.
But I do differ. I have to adjust to the fact that I can not work, walk or deal with things as long and hard as my "healthy" peers. I have to adjust to my body every day. I have to endure physical and mental pain and if I try to keep up with the average person in my agegroup I screw my health and my mind.
So I learned (even through a painful proces) that it is okay for me to work less, sleep more and be slower in chewing emotionally draining situation. But I am not devalued. And all the people I tend to put in drawers change by on discription; they are "my friends".
A have a card for disability. I can use it for public transportation, because I can not walk as easy or as fast as others. I use medical help. I use assistance at work. Otherwise I coul not live "as easy" with my disability as I do now.
I dont use my disability card in cinemas to get a reduction, because I earn enough to pay the ticket and there I am certainly not disabled.
So I can choose how to deal with my life. I am the one in charge.
And if someone doesnt understand why I have certain priviliges I learned how to try to tell him about the things I have to "compansate".
Yes I am disabled and if need be I talk about it and I show it. Some people are tall some people are circumferrencially challenged and some people are normopathic.
I guess being human is okay as long as you are not a sociopath.
Try to adjust. Adjust yourself and your sourroundings. Make the world a more colorfull and ethical place and not a normative hell.
Julia (from Germany)
Sorry, there was so much going on in my head while thinking about your post...
Thank you all for the discussion thus far - I need to admit that sometimes I feel one thing while writing and then another when reading what I've written after its been published. While I wouldn't change what I said here, I think I might have changed how I said it. To me, now, it comes across a bit harsh and self righteous. Coming out to oneself is often a difficult and painful process. It can't be rushed. When I was taking my counselling practicum for my Masters, my advisor kept telling me ... 'stop growing for people, it's their work to grow, it's your work to give people room to grow'. Um, yeah, right. So, if I was writing this again, I'd be a little more understanding about the pain and the courage it takes to become 'other' in a world that fears and loathes difference.
ReplyDeleteI think this is advice we all need to follow...Be who you are. Well, unless you are an *sshole and then they need to get over it.
ReplyDeleteI have chronic fatigue syndrome; fibromyalgia; osteoarthritis in my knees and lower back; hyperflexible/hypermobile knees and ankles; RSI pain in my fingers/hands/wrists; migraines; and sleep apnoea (among many other conditions.)
ReplyDeleteMy sole income is the Disability support pension from the government, and I have a disabled parking permit.
I use a four-wheeled walking frame to get around. Even with the walking frame, I fall over twice a month (at least).
I can't stand up for very long - I can't stand up long enough to cook a meal.
My social worker suggested I put a chamberpot in my bedroom so I don't exhaust myself getting up to go to the toilet.
Despite this, when I rang the government department Disability Services to very politely ask about whether I could get some in-home care and practical support, as I was not coping on my own and had no friends/family who could help, the person who I spoke to on the phone was extremely angry and extremely hostile to me and told me:
"You are NOT disabled! You just have medical conditions!"
That made me think "Oooh, I thought that I was disabled because I get Disability support pension and have a disabled parking permit and have to pay someone else to wash my dishes and do my grocery shopping and drive me to medical appointments, but maybe I was wrong."
When I was a child I didn't understand that I was disabled. No one told me. So saying "Well you do things differently than the other kids" was NOT okay to me. I mean everyone has trouble with some things, right?
ReplyDeleteThe person who wrote the letter is an adult but... I bet no one explained things to him either. And here is becoming disabled when he's an adult and already thinks he understands how things work!
Oh being out... I'm out to myself, but to other people it's a secret. I'm not ashamed, I'm scared. Maybe it's selfish of me to try to blend in when some people can't. Maybe someday I will be out to other people, too. But for now I'm loving inconspicuousness (as much as I can ever be that, which sometimes is not at all) and the safety that brings.
Also for the... it's not acceptance, but other people think it is. Whatever it is, it's not comforting but it sure is useful.
Oh, another thing- I liked you being more direct. There's not one writing style that will reach everyone, so if you're occasionally more direct or forceful you might reach a different audience than you usually do.
ReplyDeleteI hope if you saw another person whose MO was being direct and forceful that you wouldn't call them harsh and self righteous. We need all sorts of people to reach all sorts of people.
Despite what they're called, I think of those permits as a way to spend more of your valuable time doing the things you ARE able to do. If you can make use of a parking permit at a store, it means you can get in and out of a vehicle, and you can shop. You have the ability to do that. Of course, qualifying for a it in the first place means that making your way out of the vehicle and into the store is a greater challenge than it is for the typical shopper, and it will take you longer. If you take pride in your ability to meet that challenge without the permit, and you can afford the extra time, then by all means, leave the reserved spots for the people who really just want to get the shopping done. But it's okay to let yourself be that person, because that tag doesn't mean you can't do something. It's intended to help you focus on your objectives, instead of on the obstacles to meeting them.
ReplyDeletethank you very much for your second comment...
ReplyDeleteYes.
ReplyDeleteYet, to get to the point where that 'yes' is simply yes is tricky.
On the simplest level, it's always hard taking on a new identity, even one one's aspired to and worked for. One can feel a terrible fraud: the new shoes are a trifle stiff and squeaky, and apt to chafe, until they're worn in a bit. If one has acquired a new identity sans preparation, and is required to change to fit the shoe rather than the other way about (initially, at least) - ouch. One can only hope for good socks and lots of vaseline.
Then there's probably grieving; for direct losses, and the less direct ones, the loss of that position "inside" which perhaps one didn't know one had until one hadn't. (If only because there are always more 'outside's to be discovered than just the one one already knows.)
Equally, there can be a sense that to take this new identity is to usurp what properly belongs to others, who somehow have a greater right to it: the meeting of needs, respect, legitimacy of their otherness, and therefore other needs and other ways of doing. (Ironic, considering that, most of the time, the problem is of being made other in ways that we aren't really.)
Of course, there certainly is also disability shame - which most likely applies to the thing and to the label in different ways.
I can remember the moment, after reading your blog and others, and participating in various fora on an apparently equal basis, even working for a disability charity, when it hit me like a ton of bricks that, really, not just notionally, I am disabled. It was a blessed relief, but also rather a shock. Even though I'd been thus for years and years, there's a gulf between the 'there' of not recognising self as disabled and the 'here' of it's being obvious and unremarkable. I can't remember why it wasn't all perfectly obvious, back then, any more than then I could have realised that it was.
"Coming out to oneself" describes it perfectly.