On understanding disabilities and medical conditions

[brightlotusmoon]

Reading something that Josie posted in a friends-locked entry made me really think about how people are often treated when they have a physical disability, mental illness, or limitation that is constant in their daily lives. Sometimes I wonder if some people see it as, "She/he is a disabled person (and that's it)" or "She/he can obviously stop having these problems with a little more effort." Not looking at the whole. Not seeing that the person is complex and complete, and the conditions are merely part of who she or he is, not some separate entity that can be channeled or turned off at will.
(Quoted phrases within the following passage are from Josie's post.)
I was thinking about what I might do if I had been in Josie's sort of position, forced to defend herself against a verbal onslaught, being accused of "using" her handicaps to gain support, sympathy, or social "privileges". If I say that I'm tired or in pain because of my epilepsy or cerebral palsy or sciatica or asthma, I don't want people to think I am "forcing the issue and announcing that I expect special treatment physically and mentally." Quoting directly: "I would give honest answers to questions like 'how are you,' or 'what's going on with you,' or 'why can't you do X activity,' but that was only so that they knew where I was coming from, and the reasons behind my actions. I wasn't aware it made any demands on anybody to make allowances for who I am as a person." I agree, and I don't want people to think that "...if I tell people things about what is going on physically, it makes them feel obligated to make more allowances than they are comfortable with." I also agree with Josie that if they want us to be honest with them, they should not accuse us of playing for sympathy.
I am stating a fact: I'm not doing so well because of my disability/illness. Can you help a little me just until I feel better?
(There seems to be this constant thing between my husband and me. Because of how he was raised, and how he helped take care of his severely disabled brother, Adam believes that I should be able to do anything by myself, given the proper tools, motivation, and expectation. He sometimes will question my requests for help, thinking I'm trying to get out of doing things, making excuses or allowances for my pain or exaustion. And this often makes me angry and upset, and overly emotional. Because I feel that he is not even acknowledging the fact that yeah, I'm having problems and I actually do need help. I don't need him to help me every single time, but this time, because goddamn it everything fucking hurts. I understand that I am perfectly capable (read, my word nemesis, handicapable), but a little help might be nice. And he doesn't seem to understand why I blow up and become so upset. It's not because I'm trying cop out or make excuses. It's because hey, fuck you, I'm hurting, I don't want to cause myself more pain and aggravation, I need some help. But I also understand that he wants me to at least attempt the task as much as I can. It can get frustrating. He and are working to understand each other. Communication has always been the firm foundation of our relationship, which I am glad for.)
I just don't want to come off as sounding whiny or attention-seeking. If I'm not in pain, I'll say so. If I can do something alone, I will do it. I'm not an invalid. But just because I need help sometimes doesn't mean I am asking to be treated as special or allowing my disabilities to be... pampered, for lack of a better word. And here I am speaking for everyone with any kind of medical condition.
On that point, now, we come to the concept of, "Well, why can't you just stop being so sick/being in so much pain/being mentally sick?" You cannot ask a person with depression to "Cheer up and smile!" You cannot ask that an epileptic stop having seizures. You cannot expect a person with MS or Lupus or cerebral palsy or Parkinson's to stop being in pain, to not be exhausted, to walk normally, to be perfectly normal. It won't happen. We do not have a magical Off switch. If we did, it would have been hit long ago and broken off in the Off position. We cannot make it go away. We cannot stop it. But we also will not allow it to control us, take us over, and hurt us any more than it does now. We will not just lie down and accept it. And that, I think, is something that needs to really be understood. If I say, "I'm so sorry, but I'm in a lot of pain; I can't really do this right now," I want people to accept and understand it without assuming I'm just expecting that sympathy and special treatment. I am being honest, which sometimes may be misconstrued as "please pity me." As Josie said, we cannot control how our conditions affect us. Don't expect us to be able to. We're not being oversensitive; we are being truthful. Just give us the same consideration you would give anyone, and just understand that we do have certain limitations -- even if you don't believe we do.

Public service announcement over. Thank you.

Comments

[armandii.livejournal.com]

As the mother of a 19 year old wonderful son who happens to have autism I applaud this post.

[brightlotusmoon.livejournal.com]

*smiles* Thanks. I could have said a lot more, but I would have started rambling.
My mother teaches art classes to young children at schools around her area. In one of her classes, there is a little girl with Asperger's Syndrome. She's so sweet and she enjoys drawing, painting, and learning, even if she often has her own ideas and doesn't want to do the assignment sometimes. But there is nothing about her that should require anyone to give her some super special careful treatment, or treat her as fragile. She's fine just the way she is (her name is Hope, by the way).

[armandii.livejournal.com]

That's what I tell my son, that he's fine just the way he is. And he is.

[lily-cat.livejournal.com]

My best friend all thru college had muscular distrophy, binding her to a wheelchair. She handled it as best she could, but her answer was humour. She would refer to herself as the "little crippled girl" and knock people out of the way w/ her wheelchair. I believe her method was to "get it out in the open" so that it wasn't an issue. She was very approachable and able to talk openly about her condition w/ anybody who asked. But her bridging the gap first made people feel a lot more comfortable.

She had a big problem asking for help when we first became friends. She physically lacks the strength to twist the top off of a snapple bottle, but she would try and try until we asked her if she needed help. But within a year I was not only her best friend, but practically her personal aide. Her mother had run off to Boston w/ another man and her father worked a lot. I would go to her house, take her to the bathroom, get her dressed, do her hair, pack up her backpack, get her breakfast and I learned to drive her van w/ the ramp.

For me, it wasn't a big deal. It was me helping out a good friend. For her, she confessed that she didn't like having to be helped out all the time because it made her self-conscious that she was different. But she also said that I gave her a great deal of independence because all the work wasn't just heaped upon her father.

I've worked with severely handicapped children my entire life. I've done special olympics, been a teacher's aide and was even a nanny for 6 years for a girl with severe cerebral palsy. Non-communicative, wheel-chair bound, unable to eat except for the port in her stomach. But it's different dealing w/ children than adults.

But back to your original point, I don't see why being an "able-bodied" person makes it ok to ask for help while a disabled person gets "the look." Aimee used to call it "playing the crippled card" (her words.) But If I have to ask for help, whether I'm not strong enough or to short, nobody questions it. But Aimmee told me once that the more able-bodied you look, the less your sympathy. She says that she never gets questioned because she's in a wheelchair and people don't want to "offend" her. But saying that you have a disablity that might not be apparent from the first glance makes it harder for people to consider it. She brings up an interesting point, but I don't think it's right. People know their own limitations and abilities. If your task falls outside the realm of these parameters, definitely ask! If they give you "the look," too effing bad.

Sorry to ramble on in your comments, but this is something that pisses me off too. People who just don't understand, but don't really make an attempt to either.

[brightlotusmoon.livejournal.com]

Ahh, playing the crippled card. I know that expression well. Sadly, I have seen some disabled folks play it. I've never played it, and never will. I want to be honest, dammit! ;)

I'm just tired of people continuously assuming that I don't need help when I ask, continuously assuming that I just don't want to do whatever it is, that I'm making excuses. And then they wonder why I'm so fatigued and in pain afterwards.

hey...

[xanateria.livejournal.com]

sorry to jump in. Josie here, the girl whose post rosefox8 was quoting. I just have a comment...

"She was very approachable and able to talk openly about her condition w/ anybody who asked. But her bridging the gap first made people feel a lot more comfortable."

I applaud the sentiment behind this, but as someone who used to do this alot, I have to say, sometimes it gets really old that we are expected to use things like humour to make others comfortable. I'll answer any question anyone asks, but it's NOT my job to make them comfortable with the MS, the CP or any of my other health issues.

[unico-love.livejournal.com]

Just because you are really successful and able in some ways, doesn't mean you should have the disabilities you do have treated as nonexistant:-/ Obviously they're very easy to verify, and if you are in pain, there's no reason for you to suffer needlessly when others could help you with minimal expenditure on their part. Everyone has some area in which they have a lot of difficulty or pain of some sort; it only makes sense that other people should help out when feasible.

I've never even seen what you look like when you're in pain or having seizures, but it sounds pretty bad to me, and I can't imagine why someone would refuse to help you on the idea you don't really need it. Even if it was physically possible for you to do something, but just extremely tiresome and painful compared to what others would feel if they just did it themselves or helped you, it just seems it shouldn't have to turn into such a big deal or assuming you need to learn some kind of lesson.:(

Most people aren't going to ask for ridiculous favors and help they don't really need unless they also have some kind of major psychological/personality problem...

[brightlotusmoon.livejournal.com]

Thank you for that... :)

[thesacredfire.livejournal.com]

I think some of it boils down to a lot of people not fully grasping what its like to cope with pain on a daily basis that will hinder your lifestyle. One of the things my father said shortly after he started chemo was that he had no clue what it was like to deal with pain so often that you can't escape it. He understood to a much deeper degree what I've put up with since I was 7. Most people, those I've talked to about my physical issues, will admit that they can't imagine what its like coping with something that you can't get rid of no matter how many drugs you take.

Although my condition isn't half as bad as yours, it is enough that often times it will prevent me from doing a lot of things such as heavy lifting or simply standing without supporting myself on something/someone. I've gotten so stubborn that I won't mutter a word until the pain is unbearable and I've found myself on the floor trying to control it mentally. Then I'll speak up. I think my issue is I don't want the pity and I don't want people reading into things wrong. Its the "I can do it myself goddamnit but I will so regret this in a few hours." Hell, my wrists are so screwed up that I have to ask my boyfriend to simply open bottles for me. If he isn't around though I'll fight with the thing until I manage to get it open or give up. So, being that I'm so quiet about this, I've never encountered many problems.

Mental disorders are a completely different issue. The bullshit I'd get because of those have taught me to distance myself from my emotions to seem fine just to save me from the nonsense I use to get thrown at me. People telling me to suck it up and just fucking deal. People saying it's just in my mind and I'm only seeking attention. People trying to shove the idea of drugs down my throat and saying I don't want to help myself because I always very firmly said no, its against my lifestyle. As if, because I refused the drugs and prefered to be aware of life, I was just clinging to the conditions to get pity from others and I didn't want help.

Anyway, sorry for rambling here again but I can totally relate to everything you say here. When a friend asks for help, I help them because I want to make their life easier and I do NOT see it as a ploy for attention or to be lazy.

[brightlotusmoon.livejournal.com]

*nods* Rambling is fine, I like when other people let loose like that. *smiles*
Although I do have to admit, there's no shame in asking; the worst someone can say to you (who understands) is, "Try and do it yourself."

[faire-damsel.livejournal.com]

As Someone Else With Numerous Health Problems And Chronic Pain, I Think This Post Was Beautiful! It's Exactly How I Feel. I'm Lucky In The Fact That My Husband Is Always Willing To Help Me When I Ask For It, Or Need It, But Even Though I Go Out Of My Way Not To Include A Lot Of My Health Rants And Problems In My Public Journal, I Still Get Accused Of "Playing It Up" Or Using My Pain And Illness To Get Attention. *Sigh* And It's Infuriating. You Expressed It Perfectly And For That I Applaud And Thank You! *Big Hugs*

[brassdaughter.livejournal.com]

(Hello. I've been reading journals at random and feel lucky to have chosen yours.)
Thank you for this. I don't deal with terrible chronic pain, but my mother does and doctors are completely clueless as to how to help her. Your words speak beautifully for her, and for everyone with mental disorders. (Unfortunately I can't say I don't know about that.)

[brightlotusmoon.livejournal.com]

I'm so glad this has been so well-received! Thank you for liking it.

*nods*

[xanateria.livejournal.com]

Now if only we could make a loop of this and force the average people of the world to listen to it until they got it.

Re: *nods*

[brightlotusmoon.livejournal.com]

That'd be great... sigh.