It's Beginning to Look A Lot Like Fun*Run Time

It's ALREADY that time of year again: The ADAPT Fun*Run for Disability Rights is April 22nd 2012. Maryland's fundraising goal is $8,000 this year. Yes, that's right, $8,000

Donate $1! Donate $10! Donate $100! Donate $1,000! JUST DONATE so we can FREE OUR PEOPLE! I thank you very much for your support!

Sunday, May 6, 2012

On Privilege Part 3 I think

I wanted to write about this 2 weeks ago, and am getting to it on the eve of a much needed massage appt. I said in an earlier post that I probably wouldn't write about the national action, but I guess in a sense I am. National actions are generally painful for a lot of people. I can't speak for other disabilities, but with CP, a chronic pain condition, being out all day with limited positioning options for days at a time in unpredictable weather can increase spasticity to the point of being near tears.

I stayed in a room with 2 other people with CP and a PA. I of course was in some pain, but I'm not sure I mentioned it. I'm in pain everyday; if I mentioned it to people everyday I'd be such a debbie downer! However, unlike a former friend, I do sometimes, and don't look down on other people who feel the need. I'll most likely empathize with you. And complain with you if your doctor is an idiot. If certain anti-spasticity pills aren't working and cause side effects you don't like, try something else! Although I don't know whether or not this person asked...

Anyway, I feel privileged that I know how my body works; that I ask questions frequently and can make decisions that benefit me. I feel for the people that either cannot, or do not know how. I empathized with the person who told me she was in pain. "My hips hurt. It hurts all the way from my hip to my ribs, and I know I didn't walk at all..." She was having the bad kind of muscle spasms, the kind that pulse if you know what I mean; the kind that make me actually cry.

"Well of course you're hips hurt! (and of course your ribs hurt I thought in my head) They hurt because your not walking!"

She was in shock that I said such a thing; that I could respond that way. I'm the first person who ever has. Apparently everyone else says "but you weren't even walking!" Except I know that your hip flexors attach to your pelvis and then cross under your abs diagonally and attach part way up your spine. I also know that the back my chair, unlike most peoples, has the ability to shift from a 90 degree angle all the way to 180 degrees flat, and is drivable up to 125 degrees, allowing me to change the position of my hips back and forth throughout the day. Most people have tilt, which counteracts gravity or some such thing, but doesn't change the way your body is bent. Your head goes closer to the floor, your feet go up in the air, but your back and your hips are bent the same way all day. I'll wait while you come to a logical conclusion...

Which brings me to my massage. I'm privileged enough that I have control of 42% of my income, and I'm privileged enough that I have a total income that is over 300% of SSI. A lot of disabled people don't have incomes that high and don't have any control over the little that they do have. I'm privileged enough that as of July when I started working I have a 15% increase in my income and that I don't have to use it on food, clothing, or shelter. I'm privileged enough and educated enough to be able to use this extra resource to pay for non-reimbursable medical expenses. Not everyone can get all they need. For a long time I couldn't, but now I can.

Depending on how you look at my monthly expenses, I spend half of my paycheck every month on massage appointments. I don't view it that way. I view it as 10%, as I shifted money from other things to cover it, but it comes to 7.5% of my income either way you look at it. It would be 45% of an SSI check.

I'm privileged enough that I know how to use the internet, can research and ask questions, and was able to find a massage therapist who is walking distance from my apartment -- she's not even a block! I don't have to deal with paratransit to get there! I'm privileged enough that she treats me sliding scale, and that we didn't have to have an awkward conversation about it.

I'm privileged enough that I was able to schedule a massage appointment 24hrs before I left for DC, and less then an hr after I got home. I was lucky enough to not be in nearly as much pain as I was in the fall, and wanted so badly to give this person my appointment. Except her group home controls all of her money, and I've never met a massage therapist that would treat someone for free. It's exhausting work, and imagine what would happen if that got out! Plus this person lives aprox 20mi away, and paratransit's a bitch!

And so I sit here contemplating my privilege once again, and once again I feel guilty about it. I'm a "have" who knows way too many "have nots." This isn't a luxury. It's a necessity and an injustice.


Cortney said...

It is an injustice. It is actually one of the reasons I can never see myself moving back to the States. Massage (up to $1500/yr) is covered by my medical insurance up here. Since insurance does not have to cover basic healthcare, insurance covers thongs like massage and chiro.

I am sure people think I am a princess, but I go at least 2x a month for 1.5-2 hours. We still pay out of pocket as last year I spent $2400 on massage. But, like you, I view it as a need not a luxury.

I had very little pain until the last 2-3 years. Now pain is a normal part of life. I am constantly trying to find the balance between walking enough to keep my muscles as strong as possible and walking too much that I am in severe pain. The doc won't try anti-spasticity meds because I drive, and I use my spasticity to drive...and to walk. So, I take Aleve almost daily. I bet you can imagine how little that does.

Anyway, my heart cries for anyone in makes life incredibly difficult. I also never take for granted the fact that I have the ability and education to make a decent living and pay for things to make it slightly better.

Keep up the good fight.

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