Another ridiculous media portrayal of disability making our lives worthwhile

December 17, 2012

I started this blog because I was sick and tired of hearing stories about how it’s so worth it to have X health problem because of all we learn from it and blah blah blah.  Yes, I have received a lot of insight and wisdom from my health problems.  And if I didn’t have my health problems I’m sure I’d have gotten that insight and wisdom from someplace else.  After all, healthy people find it.  And I’d gladly give up those “benefits” this instant if it meant I’d get my health back.  It just pisses me off when people suggest that it’s worth being sick because of all we learn from it.  If they want to say that’s true for them, I’m fine with that, but so often it’s suggested that this is true for everyone, and that’s just not the case.

In general I like the tv show Glee.  I started watching it because all of my queer friends were watching it, and they made it sounds much better than I would have expected a show about high school kids to be.  Mostly, they and I loved that it was so inclusive of our LGBT community.  This show covers difficult topics like bullying, domestic abuse, and eating disorders.  It also has characters from minorities that aren’t often seen on tv, and never so many in one show: gays, lesbians, bisexuals, a possibly (I think likely) transgender character, one with down syndrome, a student of mixed race, blacks, Asian-Americans, a Jew, an evangelical Christian, someone with OCD…. it’s really quite amazing.  And from the start, there as been Artie, who is in a wheelchair due to an injury sustained in a car accident that occurred some time in the past.

Tiny spoiler alert: What I say now gives away a tiny part of this past week’s show, aired December 13.  It does not in any way spoil the ongoing plots of the show.

In the first moments of last week’s episode, we see Artie looking and acting upset, with a bruise on his face, and we immediately learn that the janitor didn’t salt the ramp into the school and so he slid down it and fell out of his chair.  He was humiliated to have to wait for someone to come by and help him.  He says that he wishes he’d never been in that accident and ended up in his wheelchair.  This is where the It’s a Wonderful Life ripoff comes in.  Yes, that’s right – a student/spirit comes by to show Artie what life would be like if he’d never been in that accident.  Of course, everyone else is much worse off.  His friends are no longer his friends, some are being bullied, others haven’t graduated like they should have, a teacher has stayed in a bad marriage.  What’s more, it turns out that Artie is a jerk.  He’s one of the bullies.  People are miserable.  All because he was never paralyzed.

In the end, Artie must choose whether to stay in this new messed-up reality or to go back to being in the wheelchair.  Of course he chooses the chair.

Now obviously the ways in which everyone else’s lives are messed up is a bit far-fetched, but they need it to make the plot work, so let’s just go with that for now.  As always, though, there’s no mention of the people whose lives would be improved by that accident having never happened.  I bet his parents would be happier for not having gone through all of that stress.  And what about the other driver?  And maybe one day he helped a neighbor carry something heavy upstairs.  I bet there are all sorts of ways he could have helped people, or otherwise affected their lives in a positive way.

As for the idea that Artie was only a nice guy because of the accident, I have to object.  I’m not sure how old his character was when it happened, but I really have my doubts.  Still, it’s high school, so it’s very possible he fell in with the “wrong crowd” when he could walk, and that didn’t happen when he was in the wheelchair.  But there’s this suggestion that I see and hear so often that the illness/disability makes us better people.

I don’t know about you, but I’ve met some disabled people who are real assholes.  And I’ve met non-disabled, non-ill people who are really nice.  Funny how that works.  It turns out, you can be a great person AND be healthy!  You can be a jerk AND be disabled or ill.  Go figure!  (You get that that’s sarcasm, right?)

Finally, there’s this idea that Artie became such an amazing, selfless person simply by being in a wheelchair (I was going to write “by being paralyzed” but that’s really not the focus in the show, the focus is the chair) that he’s even willing to go back to being unable to walk for the rest of his life just to make everyone else’s lives better.  Sure, this makes his life better too because he gets his friends back, but my impression was that he did it mostly to help everyone else.  Because, you know, we ill and disabled people are always so selfless like that.

Actually, I’m a pretty selfless person.  I go out of my way to help others.  I was like that long before my health problems started.  And if I was told I’d get my health back but I had to personally hurt people, I wouldn’t do it.  But if I was given the chance to be healthy, and I knew it might hurt some people but help others, and I wasn’t directly responsible for changing reality, I’m guessing I’d go for Door #2: GOOD HEALTH.

Like I said, I enjoy this show and I really appreciate the way that they handle complicated and controversial topics that other shows avoid.  Overall, I think they do a good job.  I guess that’s why I was extra disappointed to see this initial part of the show, which once again reinforced the ridiculous, deluded idea that ill/disabled people are inherently “good” because they are ill/disabled and that they don’t mind being ill/disabled all that much because they know that it makes everyone’s lives better.  How are we ever going to get the respect we deserve as long as this message is being communicated to the masses?


Ignoring vs. succumbing: Yes, there’s another option

December 14, 2012

Lying in bed, unable to sleep at 4am because I couldn’t stop thinking about a lovely woman who is slowly dying, I found the Twitter hashtag #EverydayAbleism.  And then I had the kind of profoundly insightful moment that only happens at 4am when Anti-Ableismyou can’t sleep.  Obviously at 4am it wasn’t all that insightful.  Still, I wanted to share that with you here.

A hashtag in Twitter is a way to call out a word or phrase, and to group it with other posts containing the same group or phrase.  #EverydayAbleism is being used for people to give examples of ableism they encounter throughout the course of a normal day.  It is frustrating and disheartening to read these examples, but it is also encouraging and empowering to see so many people calling attention to these wrongs, in an effort to educate people to correct their behavior.

As I read, I thought about how some people are mean, nasty, selfish, hateful, inconsiderate, or just plain assholes.  There are other people who are stupid or ill-informed.  But then there are those who just don’t get it.  I think these people honestly believe that if someone has a chronic, life-altering condition, there are only two ways to handle it:

  1. Ignore the problem and get on with life.
  2. Give in to the problem and give up friends, family, job, hobbies, etc.  Live off government handouts.  Rarely leave the house.

I think there are people who really do believe that you must either live as if the problem didn’t exist or else let it consume you entirely.  These people have never lived with such health conditions themselves, so they can only go by their own experiences.  If they get a cold, they move on with life.  If they get the flu, they lie the couch for a week until they feel better.  To them, this is what illness entails.  There is no middle ground for them.

It is easy to assume that anyone who exhibits ableism is a jerk, but I think that there are some who simply don’t get it.  They can’t understand that an illness can affect your life without halting your life.  It may be a waste of time to try to educate the assholes, but maybe we can education the deluded?


“A great doc, but you didn’t hear it from me”

December 6, 2012

Our medical system is seriously fucked up.  I’m sure this isn’t news to you (and if it is, you can start learning about it here and here.)  Now, I know that some parts of it work well.  I used my new health insurance for the first time today, and that was great.  But in so many other ways, it just doesn’t make any sense at all.

What do you think is the point of healthcare?  Personally, I think it is to maintain good health, and to achieve improved health when needed.  Unfortunately, healthcare here is a business, so to the people in control, it’s about making money.

I saw my rheumatologist today, and of course at one point we talked about how I need a new endocrinologist since my old one dumped me.  He didn’t like that I require so many expensive tests, so much effort, and so much insurance-related paperwork.  I asked my rheumatologist for her advice.  She confided in me that there were a few in her hospital system that I should stay away from, and she asked me not to tell anyone that she’d said that.  Ok, I get that.  She shouldn’t bad-mouth colleagues.  No problem.  I would never say a word.  No one should bad-mouth a colleague – it’s bad etiquette – but when it’s a matter of someone’s health, it’s worth it.  All good, right?

But then she considered things, and finally told me about a center at another hospital that specializes in thyroid work, which is what I need.  She said multiple times “but you didn’t hear it from me,” and I assured her that I would never let on.  If I thought that writing this would in any way haunt her, I’d never write a word of it.  The last thing I want is to hurt someone who has fought on my behalf many times, helped me immensely, and gone above and beyond.

So here’s why I’m upset: why should a doctor get in trouble for telling a patient about a treatment center that could help them?!?  Think about that.  She would get in trouble because she suggested that I go to a different hospital.  She is not telling me that her hospital sucks.  She is not telling me to leave her practice.  She is not treating me badly. On the contrary, her primary concern is my health, and for that reason she is suggesting that I see the practitioners who are most likely to help me improve my health.  Once again, her focus is on my health!

And that’s why our system is completely fucked up.  Because a doctor can get in trouble for helping a patient improve their health, if it means sending the patient (and therefore the patient’s money) to another center.  Wrong wrong wrong.

So while we’re at it, PLEASE let me know if you can recommend a good endocrinologist in the Boston area.  I will consider my rheumatologist’s suggestion, but I don’t know yet if that place will offer what I need, or if they’re taking new patients.  Please send any and all suggestions.  I need someone who does thyroid work, especially Hashimoto’s.  Thanks!


Why too much strength can be bad

November 20, 2012

When I had to leave my job last year, I expected everyone to be supportive.  The responses shocked me.

Yes, my close friends and family were very supportive.  Really, except for my sister (but there are other issues there), I couldn’t have asked for more.  It was amazing.  The shocking part was the number of people who seemed surprised when I left my job.  Many asked why I was leaving; it had never occurred to them that it could have been because of my health.

Over the years I’ve put on a brave face.  I do this partly because I don’t like to dwell on all the health crap.  I like to focus on the better parts of my life.  I do this partly so people don’t get annoyed that I complain too much.  I also do this partly because I feel like if I let my guard down and give in a little, that I’ll end up giving in a whole lot, and I won’t be able to keep things in control anymore.

I thought of that just now when I saw this on Facebook.  It’s so true.  I work hard to “keep it together,” to not dwell on the shit I deal with daily, and to appear ok.  And that means that most people have no idea what I deal with, even in the smallest way.  I’m not looking for every person I know to check in on me constantly, but I suppose I need to let them know at least a little bit about what’s happening.  After all, how can I expect to raise awareness when even the people in my life don’t realize how sick I am?  And on a much simpler note, I need to let people know so that they’ll understand that sometimes, I really just need a hug. Being strong is good, but some days, a hug makes all the difference.