(no subject)

[nilchance]

From September 8th to the 14th is Invisible Illness Awareness Week. I'm going to try to blog daily on the topic of invisible disability, but ironically my fibromyalgia is flaring up, so we'll see what I can do.



I used to be that asshole in the parking lot. I check for the handicapped tag when I pass those parking spots. I used to check not only that the parked cars had one, but that they "deserved" it. If you walked fine, if you didn't have a cane or a service dog or a wheelchair in the backseat, I used to judge the hell out of you. Sometimes I did it quietly. Sometimes it came with pointed remarks about "oh, they sure look disabled, don't they?"

Ahaha. Yeah. The goddess has a sense of humor.

For those of you who don't know, I work in a disability services office. My mom is disabled; she was diagnosed with MS when I was 2. I have fibromyalgia and chronic daily headache with a side of depression. And with all this dubious experience, let me just say: most people with disabilities don't look like it.

I should've known better. Mom didn't use a cane or a chair until I was 15; you couldn't tell that this short firecracker of a woman raged inside with bipolar disorder, that she had bruises under her clothes from injecting herself with a drug to suppress her immune system so it didn't eat her spinal cord, that she had holes in the gray matter of her brain. But it was easy to judge. Disability was the blind man with a white cane, the mentally retarded students my mom worked with, the wheelchair, the flurry of sign language.

Disability is "oh, but you look so good!" It's friends and relatives suggesting vitamins and prayer. It's professors telling you that you just can't hack it and you're wasting their time. It's working through chemotherapy for the health insurance, it's high divorce rates and doctors who police your painkiller usage. It's not that easy, is what I'm trying to say.

The other day, as T and I pulled into the library in a space beside (beside) the handicapped spots, there was a young couple staring at us. While I got out of the car, I heard the woman mutter, disgusted, "oh, they really look disabled."

It's not the body that's disabled. It's our culture, the one that lays out rules about who gets to be "really" disabled. It's the Jerry Lewis telethon that tells us to pity poor cripples and to pay out for a cure, rather than using the money to pay for ramps and health care. It's the myth of the welfare queen and the person bilking SSDI, the expectation that everyone is trying to pull one over, the lack of compassion for each other. That's a real disease, and it's not invisible. You can see it everywhere you go.

Especially in parking lots.

Comments

[girlfan1979.livejournal.com]

Well said.

[nilchance.livejournal.com]

Thank you! I try. ;)

[lomer.livejournal.com]

I'm glad you mentioned this because I'm guilty of it too. Though one of the big reasons I judge people for using handicapped spots when they don't look handicapped, is I've known people who've borrowed their grandmother's sticker and felt CLEVER for using the closer spots, or the free spots. That's conditioned me to look at people who park there and think "really?" But you're right, not everyone who needs those spots LOOK like they need those spots. I know just as many people with invisible illnesses as I know assholes who steal parking spots.

[nilchance.livejournal.com]

Yeah, I hear you. My dad used to "borrow" my mom's tag and park close when his back was hurting.

[quiet000001.livejournal.com]

Heh. Just the other day I had a major debate with my mom as to if we should apply for disabled parking hang tags or not. The cultural rules about who gets to be disabled even prevent people who ARE disabled from taking advantage of the things available to them to improve quality of life- like my mom saying neither of us should get a tag because we don't need wheelchairs.

(I personally am probably going to try to get one anyway- I am sick and tired of trying to find parking close to the store in the winter when the parking lot is all slippery. One of these days, I will be walking across said slick parking lot with my joints all bad, and I'll slip and because my joints are bad I won't be able to catch myself and I'll break something. And we won't even talk about the days when every step is agony.)

I may have to post something about this topic.

[nilchance.livejournal.com]

Ugh, yes. I definitely hear you. I don't use a chair and I'm currently fighting my own definition of "really disabled" to apply for a tag for those days you mention, when a close parking spot is the difference between using up all my energy or not.

[embroiderama]

The parking spot thing can be crazy. My 83 year old grandmother has a tag because arthritis and back problems she has. Most young people don't second guess her walking out of the car because she's a tiny old woman. However, when I went out to lunch with her several months ago, we got sniped at by another, more visibly disabled old woman who'd had to walk from a slightly farther handicapped parking spot. *sigh*

[nilchance.livejournal.com]

Ugh. I'm sorry, that's a wretched situation.

[idiot4dean.livejournal.com]

I agree with you. Although I don't have a disabling illness I work primarily with the elderly and they can be really bitchy if they think someone is getting more attention and can't see the reason. I, like you, have in the past bitched about people getting disability stickers and then not appearing disabled. Today I'm just as likely to argue the opposite when I know people who can't get stickers but have problems walking very far, or who to look at appear fine but I know today is a good day and tomorrow they may not have the energy to get out of the chair.

I still bitch about those who think other people should be getting they everything they want and then are still not happy and want more. And those who when they find they get attention by being ill, they always seem to not feel well and need help. They give the genuinely disabled a bad name by not seeming to try and help themselves.

If you think I lack compassion for saying this it is because I see people from both sides.

I have a cousin who was disabled from birth who has worked hard his whole and has never claimed disability. He has helped with charities to help less fortunate disabled people. When he was younger I remember pushing him around in his wheelchair and although for many years he just used crutches he now needs a wheelchair again. His first wife also had disabilities but not as bad as him, throughout their marriage she gradually went from being able to walk, to needing crutches and finally having him push her in a wheel chair trying to make people feel sorry for her. Since their divorce he has found a new girl-friend who is also disabled from an accident. She has got him organised and does all the housework never letting her disability stop her, even though she needs a wheelchair to get around.

I have a similar situation at work where one person has always bemoaned how ill she is and deteriates if she wants sympathy, while another who has been ill much longer tries to look at the bright side and encourage other people to do the same.

Whenever I've read your journal I've always thought that you remind me of those people who try to make the best of things, even when they don't feel like it, so please excuse me for being down on those who want to wallow more than is useful to feeling better. We all wallow soemtimes, but not every time someone asks how you're feeling.

Take care and wishing you well.

[nilchance.livejournal.com]

I have a similar situation at work where one person has always bemoaned how ill she is and deteriates if she wants sympathy, while another who has been ill much longer tries to look at the bright side and encourage other people to do the same.

IDK, sometimes I feel like I'm perceived as the former person because I ask for a little flexibility. YMMV, y'know?

[idiot4dean.livejournal.com]

Glad you understood what I was saying.

I don't see you as the former as I've always seen you as asking questions to help yourself and others, your attitude is not the selfish one of the former.

Hugs for understanding.

[poisontaster]

The whole POINT of nilchance's post was that you don't know what circumstances anyone else is living under. You are not in a position to judge how much pain or misery they are in, physically, emotionally or mentally.

Yet, I find the tone of this comment to be extremely judgmental, where you feel more than free to decide who's REALLY disabled and who's just "bitchy".

[idiot4dean.livejournal.com]

Actually the people quoted were all people I know personally. I started my note by saying I wasn't disabled, I didn't mention any of my own ill health as I considered it irrelevant because I am not disabled (in pain on a daily basis yes, but not disabled).

I know people who suffer daily (not myself but people I work with every week) but will psych themselves up to make others think they are better than they really are but I also know others who will complain that they are really sick but within mintues of saying that will be rushing out without taking any medication. As I said I know these people personally, if I didn't I wouldn't judge and have defended these same people against others who don't know their personal situation. I treat try to treat the people the same and do my best to help them achieve their aims whatever my personal opinion but it doesn't stop me having an opinion.

From my own experience I know that if I'm having a bad day and wallow, I'll feel worse but if I fight then I generally can do more.

[poisontaster]

Okay, you are again MISSING THE POINT.

1. Your personal experience only comprises a VERY SMALL PART of human experience.
2. You are NOT IN THESE PEOPLE'S SHOES. Even when you are a peripheral part of their life, YOU DO NOT KNOW WHAT IT IS LIKE TO BE THEM. YOU DO NOT GET TO JUDGE.
3. Being told to "buck up" and "don't wallow" is part of the problem. Don't be part of the problem. Check your ableist privilege. When you don't feel good, haven't felt good and might never again feel good, "bucking up" is THE HARDEST THING IN THE WORLD TO DO. If you are not in that situation, thank your deity of choice, be quiet and stop telling people who ARE in that situation how to feel or what to do.

[idiot4dean.livejournal.com]

You seem to be assuming that I am telling these people to 'buck up' and not just stating an opinion of why people can get judged. One of the people I was refering to has said several times that I saved her life when the hospital had sent her home. If I and another visitor had judged her in the same way as the hospital she would not have had a life saving operation. But it could have been a case of crying wolf because the hospital had not realised how sick she was on that day because she comes over as a moaner.

At the end of the day we all judge other people but it is our acts which determine the extent of our bigotry. I still think it's important to acknowledge that and make comment, afterall you've judged me without knowing me.

As for your point 3 I've been there, done that, considered suicide and I'm still here fighting out the other side and trying not to slip back. So maybe I should stop feeling the compulsion to comment and just read the fanfics that brought me here in the first place.

[poisontaster]

Look, I'm not trying to be mean to you. But by being on NILCHANCE'S LJ and making these statements, you are, in effect, telling someone in that position to buck up.

Second of all, everything I said was on the words you put here. I didn't just say this based on no information. I responded to what you, yourself put out there. There's a big difference.

Third, I'm glad that's a method that worked for you. The POINT is that that doesn't work for everyone. And that you are still making broad, sweeping statements about people based on situations you know nothing about, except as an outsider. You are showing your privilege. You are not acknowledging your privilege. And you are doing so on the journal of a person who doesn't have the options that you do. Perhaps you should think of that before you speak up about a situation that YOU only know from other people but that SHE is LIVING.

[idiot4dean.livejournal.com]

I'm glad Nilchance is more magnanimous in her reply to my comment as I didn't intend to offend her.

Trying to defend making a comment with you is likely to send me into my annual depression, so I'll give up now.

[poisontaster]

Nilchance shouldn't HAVE to respond to this. It doesn't matter if you meant to be offensive or not...you came into the journal of a person less abled than yourself and said some pretty offensive things about disability and disabled people in general. In a post that was about creating awareness and understanding on the topic. Your intentions don't make that okay.

[sixersfan.livejournal.com]

I think the entire point of the week, and this post, is that none of us really know what another person is actually capable of doing or handling. It's not our place to speculate and judge based on that. Even if we may know five hundred thousand people personally, none of those five hundred thousand has a thing to do with an individual you don't know. And, frankly, you still don't know all about those five hundred thousand people you do know. The details are very important here. The little aches and pains matter. Long term consequences matter (by this I am referring to the effects of having to walk an extra forty feet a day may have on a person's ability to walk at all five years down the road). They are called invisible illnesses for a reason. The sufferers of these illnesses often lack the knowing of what they must endure and what the battles and obstacles are in store for them. We outsiders (outsiders in this case being anyone other than the individual sufferer, and yes, that includes fellow sufferers of the same illness) are in no position to speak to, speculate about, or doubt that person's capabilities and limits, which probably change on a daily basis.

Whether in blanket statements or testimonials based upon specific people you or I may know, any attempt to link the two is a detriment to the entire understanding of the issue.

Generally speaking, I am willing to live with the knowledge that 25-60% of the people who reap the "benefits" of the system are "cheating" if I can also have the knowledge that all those who need the system are benefiting from it.

[idiot4dean.livejournal.com]

Unfortunately I know too many people with both hidden and unhidden disabilities who cannot benefit from the system. I could quote but that would probably be wrong, as my comment seems to have drawn complaint about its content.

[sixersfan.livejournal.com]

I'm sure you do; I think most people do. My issue with you is that your comment seemed to imply that you doubt everyone who doesn't have an obvious disability and special need. You come across to me as looking negatively upon anyone who is benefiting from the system, as if only those who are cheating the system are able to make use of it.

The scope of my discussion was the need for understanding and respect, not the way the system works.

[idiot4dean.livejournal.com]

Actually I don't doubt 'everyone' who doesn't have an obvious disability or special need, but I do know people who use their disability to gain extra attention at the expense of those who have a hidden disability and who complain about those people getting help 'at their expense'.

Recently someone with a 'hidden' disability who I was helping complained that when he went to see a doctor to get DLA the previous person told him to lie about what was wrong with him. He didn't and did get his DLA but was appalled that someone should suggest this to gain the benefit.

I actually believe that it is harder for someone with a hidden disability to access any system because it is more difficult for them to 'show' the controllers of the purse strings how it affects them.

I have great respect for Nilchance and the many other writers here who put themselves on the line to discuss the problems of disability both in their lives and around them. I also have to learn about disabilities in order to help people get the best help they can, is it so wrong to say that not everyone is genuine and that as we respect the ones that are we should feel sorry for the ones who crave the attention that they perceieved is available for those with a disability.

I finish by apologising (because I'm sure someone will pick up on it) if any words used within any of my comments have not been PC, since it changes I may not be following the current terms.

[softbluebuddy.livejournal.com]

I have understood for quite some time that not all disabilities are viewable to the naked eye and have not judged anyone in a parking lot, it is not my place.

If it is just someone trying to get over on the system, that is their problem if they are able bodied and just running into the store for something. But, I never judge.

I work with people who due to the nature of my job, I have to ask them health questions, and I learned so long ago that there are a number of ailments that don't show outwardly and so I also never assume anything about anybody. In either direction. I don't assume everyone I meet without visible handicaps is able bodied, or able minded for that matter.

Nor do I assume that everyone I meet who has an outward indication of disability is helpless or pulling a scam. I try to take each person as they come. I never automatically help a visibly disabled person before asking first if they want some help. If they don't thats fine, I still smile and tell them to have a nice day.

If someone needs help from me whether they are visibly disabled or not, they are going to get it along with my empathy but I am not going to treat people like victims. It isn't fun being treated like that, so I won't do it back to other people.

I am sorry you have had such an ordeal with this. Fibromyalgia from the people that I have met who suffer from it can be absolutely debilitating, but you unfortunately don't get to pick your good days adn your bad days. It probably feels as though the universe conspires against you on the days you need to get the most done, you often feel the worst.

I send out positive thoughts that your situation is as good as it can be, but I am not gonna tell you to take a vitamin, or pray, or sit in some healing waters. Just good thoughts. That's all I can give you, and maybe, a little understanding.

[nilchance.livejournal.com]

If someone needs help from me whether they are visibly disabled or not, they are going to get it along with my empathy but I am not going to treat people like victims. It isn't fun being treated like that, so I won't do it back to other people.

And THAT'S important, too! So many of my students have heard "oh, poor lamb, you can't do anything" for so long that they're happy to have our office tell them that they can do this college thing and that they're strong BECAUSE of their (ADHD, depression, whatever.)

I send out positive thoughts that your situation is as good as it can be, but I am not gonna tell you to take a vitamin, or pray, or sit in some healing waters. Just good thoughts. That's all I can give you, and maybe, a little understanding.

Thank you, love. That helps more than you'll ever know.

[deadlychameleon.livejournal.com]

It can be particularly difficult when you have something that varies widely in severity.

Most asthmatics don't have a lot of symptoms, it's an occasional thing, or some guy taking a puff on his inhaler before gym class. And then there's people on oxygen tanks with emphysema or Chronic Obstructive Pulmonary Disease. There's a lot of space in between, and I'm "lucky" that I can still exercise, walk around, etc, but mostly have a problem with harsh chemicals and perfumes. No, it's not the smell, no it's not the hippie ethos, though I have a little of that too, it's the fact that it makes my lungs feel like they're on fire.

And yeah, I didn't use to mind smoking either. Turns out when the effects are immediate pain instead of cancer in 20 years, you start to appreciate the case against smoking in public a lot more.

[nilchance.livejournal.com]

Oh, man. *pet* That's awful. I react poorly to smoke and chemicals, but I'm lucky in that I can tolerate them to a point.

[evilpuppy.livejournal.com]

It's the people telling you you're too young to be disabled, so you must be faking the pain.

[atypia.livejournal.com]

I was once told my hair was too shiny for me to possibly be sick.


That sad part was, they thought they were giving me a compliment. I didn't have anything to say, I just walked off. Gotta love extended family!

[nilchance.livejournal.com]

YES. Yes. My neuro actually had me convinced that I was "too young" to have fibromyalgia, and that I only thought I had migraines because my mom has MS. UGH.

[lazar-grrl.livejournal.com]

It's the people who judge you on your good days. Your good days are the only ones they see, because on the bad days you can't even leave the house.

It's the people who don't understand that pills can't fix everything, that the drug side-effects can be worse than what they're treating, and act like it's some kind of personal failure of yours that you had to stop taking the meds.

It's the people who try to help, but refuse to understand that they're making things worse. Putting in a "fresh scent" chemical air freshener in your room, because the musty air must be causing your migraines. Dragging you out of your house during an attack of agoraphobia and leaving you even more drained and twitchy when they finally let you go back.

It always seems to come down to people.

[nilchance.livejournal.com]

Putting in a "fresh scent" chemical air freshener in your room, because the musty air must be causing your migraines. Dragging you out of your house during an attack of agoraphobia and leaving you even more drained and twitchy when they finally let you go back.

That just made me shudder in sympathy. God, that's awful.

[lazar-grrl.livejournal.com]

1 air freshner + 1 migraine = repeated vomiting and knocking myself out with narcotics once the puke stopped. Though she was absolutely horrified and never again fucked with my environment, so I think it worked out for the best.

[ink-blots-101.livejournal.com]

As someone with Chronic Fatigue, I can relate. Even my mother has that mentailty of it's invisible so it's not real. Last week when I had a bad day (I couldn't even stand up), she said that if I really had CF, it would show up in my bloodtests. I had to crawl away from that arguement.

But yeah, most people look at me and see a 20 year old on disabilty support and say I'm faking it for the money which is just sad. I've been on medication for 5 years! Even my brother says that depression isn't a real disablity and he's waiting for me to "get over it". I've yet to stick around to see what he says about CF. *eyeroll*

It's actually lead me to feel guilty simply because society doesn't "see" beyond the surface. If I had crutches or a wheelchair, I bet it would be different. But because I don't and a lot of others on disablity haven't got visible diablities, a lot of people get turned down for the support they need and are seen as faking it. Argh!

I'm off to see if I can donate my support pay to this thing. \o/ Apart from paying rent, I usually end up donating most of my money. >>;

[nilchance.livejournal.com]

Ugh! I'm sorry, that sounds like a really intolerant situation. I'm lucky enough that my family believes in invisible illness and that my dad's reaction to watching me limp around was "no, there's definitely something WRONG, you need a doctor."

You shouldn't feel guilty. CFS is a real, disabling condition. Some studies show it's just as disruptive to your life as cancer or diabetes. You're doing amazing work just getting out of bed and speaking your mind, and I'm sorry other people can't see that.

[sleeping-dragon.livejournal.com]

So many of these comments remind me of my mom's reaction to one of my aunts. My aunt decided a while back that she's 'sensitive' (not quite allergic, but has bad reactions to) various chemicals and foods. She's taken a very unorthodox approach to dealing with this. It drives my mom, the doctor, up the wall, mostly because my aunt (who's on dad's side of the family, btw) has decided that the whole family must be similarly afflicted. Now, Mom is not against organic foods or even acupuncture or anything else that helps you. She works with autistic kids; she's all in favor of do-it-if-it-helps even if there's no logical reason for it to work. But she rolls her eyes at the lengths to which my aunt has taken it (and I confess, I have too a time or two). Thing is, Mom would NEVER say boo about it to my aunt. She's not sure there's any actual basis to my aunt's complaints, but my aunt has lost a lot of weight (in a family with a history of type 2 diabetes), feels healthier, and seems happier (we only see her ~ once/year), so even if that's all down to placebo effects, go my aunt. And if that means using baking soda and vinegar to do our laundry before we visit, yeah, so what? It's not like those are expensive, hard to find things. Maybe there's an issue, maybe there's not, but mom's not going to be the one who deliberately uses unscented fabric softener to 'test' aunt's ideas. 'Cause my aunt could be right.

I think that's a pretty good model to work with really. Someone tells me they're in pain, disabled, whatever. Okay; they're in pain, disabled, whatever. Because even if they're the schmuck using the handicapped space when they're entirely able-bodied and have absolutely no need for it physically? Clearly, if they're doing that they're seriously deficient in compassion, empathy and human decency. And that's WAY worse than pain, needing a wheelchair or other disabilities. Because they can choose to be empathetic, compassionate, and decent, and instead they chose lazy and selfish. Folks who truly needed that space, they didn't get a choice.

Anyway, that's just my two cents, as the girl who's been told far too often that her learning disability (ADD) doesn't exist.

[nilchance.livejournal.com]

Clearly, if they're doing that they're seriously deficient in compassion, empathy and human decency. And that's WAY worse than pain, needing a wheelchair or other disabilities.

I think that's a great way of looking at it. And kudos to you and your mom for taking your aunt at her word.