Sunday, February 22, 2009

I'm Disabled. So What!

I often try not to think about lupus being a disability up until the point I get that note from my doctor saying that I have to stay home from work for a few days and rest, or those other times when my doctor gives me a note to get a disability placard for my car because I can barely walk ten feet.  There are also times when I need a wheelchair to get around because the pain is too much to bear. At these points I feel like the only disabled person in the world.  At some point during my episode of self pity, I realize that as disabilities go, I'm pretty lucky.  All my body parts still work.  They may be swollen and painful, but they are working.

I'm thinking about this on Oscars night because of the Disability Advocates who are protesting the Humanitarian Award given to Jerry Lewis.  Advocates believe that Jerry Lewis portrays the disabled as pitiful and pathetic.

My mother used to tell me that blacks have to work twice as hard to be considered half as good.  As I grew up, I realized that black women have to work three times as hard to be considered a third as good.  Now, I'm thinking a disabled person has to work four times as hard not to be considered pathetic.

My boss Carlo (who abandoned me to go work for Yahoo!) used to treat me like he was one of my brothers.  When he saw that I wasn't feeling well, he'd crack these insensitive jokes.  Oddly, this helped me feel relaxed about my problems because I knew my boss treated it as no big deal.  He knew that I could still do my job no matter what was happening physically.

I honestly just want to be normal, but that's just not the case.  I would like to go out for drinks with friends, except I don't drink.  I'd like to order a non-alcoholic drink without being questioned as to why I didn't and have to answer a myriad of questions as to why my lupus medications don't allow such a dally into alcohol, and then listen to how other people with lupus drink away with no worries.  I'd like to be able to perform simple tasks without people trying to take the responsibility away from me.  I'd like to be considered for promotions without wondering if senior staff will question my health and abilities.  I would love to climb a flight of stairs without my husband asking me if I'm going to make it.

Anyway back to Mr. Lewis' Humanitarian Award.  Mr. Lewis is quoted as saying, "You don't want to be pitied because you are a cripple in a wheelchair? Stay in your house!"  Mr. Lewis may be a bit insensitive in his statement here, but unfortunately, he has a point.  Whenever I'm in a wheelchair, I do catch the eyes of people staring at me in pity.  I guess it's just human nature.  I think this pity puts a duty on the disabled.  We have to prove to others that we aren't to be pitied.  That even though we have certain physical issues, we can move beyond them and be treated as equal members of society who shouldn't be pitied any more or less than anyone else.  It resembles the same fights that African-Americans and women have to make.  I have to say, "I'm black.  So What!"  I've also said (most of the time to my brothers), "I'm a woman.  So what!"

Now with these issues of the pity I receive for having lupus, it's up to me to stand-up (or sit in my wheelchair) and say to Mr. Lewis or anyone else who tries to pity me, "Yes.  I'm disabled.  So What!"

I guess that's it for my lupie soapbox today.

Have a Lupie Day.



LFA said...

Hi there ...

I am hoping you can help me rally all the "lupus troops."

March 3, 2009 is the Lupus Foundation of America’s 11th Annual Advocacy Day on Capitol Hill. Even if you cannot physically join us on Tuesday, there are still several things you – and your family and friends – can do to help raise awareness about the seriousness of lupus.

To learn all the easy things you can do from the comfort of your home, please go to

To take it a step further, if you're willing to do so, I'd really appreciate it you would consider posting this information (what you find at the link to my blog) on your blog, and letting all your friends and family know how important this is to the lupus community.

If you have any questions, feel free to email me at

Thanks for your help.

All the best, Wick

The Lupie Kat said...

I'm sorry. I was out of the country and just returned, so I missed this! I would have loved to help otherwise.

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