A lot of blogs do a little segment called Thank You Thursday so I thought I’d try it out, especially as today is a particularly poignant anniversary for me.

On May 27, 1995, Christopher Reeve was paralyzed as the result of a riding accident and he became a ventilator-dependent quadriplegic. Reeve used his money and fame to start the Reeve Foundation, which is dedicated to “curing spinal cord injury by funding innovative research, and improving the quality of life for people living with paralysis through grants, information and advocacy.” I don’t know a lot about Christopher Reeve, except that he played Superman and that after his accident, he became the face of spinal cord injury. He showed the world that even if you were a quadriplegic, you still had a brain, you still had a heart, you were still a person and you could still change the world. From what I can tell, his foundation blew the field of spinal cord research wide open and was one of the most vocal proponents of stem cell research (along with Michael J. Fox) during the Bush years.

If Christopher Reeve hadn’t been injured, I am not sure I would be here today. When I became a quadriplegic, my doctors loaded me up with steroids for months. Eventually, the lesions and swelling on my brain stem came down and with the help of the best therapists ever and an unbelievably huge amount of work, I started to get almost all of my mobility back. I don’t know if those therapies were available before the Reeve Foundation started funding research, but I do know Christopher Reeve created an atmosphere of hope for people with spinal cord injuries and paralysis.

I was given the steroid regimen because even though my case looked dismal and there was almost no chance I would regain any mobility whatsoever, it was worth a shot. I was sent to the best spinal cord rehabilitation unit in the state, and possibly the Midwest, because my doctors and insurance company understood how crucial the best physical and occupational therapy was rather than send me to a “long-term care facility”, otherwise known as a nursing home. Even if I had never moved a muscle again, these were the people would try to coax any life out of my damaged nervous system and teach me how to live as a person with a disability. My therapists never gave up on me and I did regain most of my mobility and begin to learn how to care for myself again.

The likelihood is that had I been sent to this particular spinal cord rehabilitation unit (at Froedtert Hospital in Milwaukee, WI), I would have had this experience no matter what. However, had there not been Christopher Reeve and the Reeve Foundation, I am not sure I would have received the same drug regimens at the first hospital or even been sent to Froedtert for specialized spinal cord rehabilitation. Without Christopher Reeve or the Reeve Foundation proving that people living with quadriplegia can still live full and productive lives, I’m not sure anyone would have had any hope for me at all.

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I follow @UnitedSpinal on Twitter and have found that they are generally a decent resource for information on spinal cord injuries. Still, this recent tweet ticked me off:

A person with a disability may be well qualified and in need of income, but still not ready in attitude to work. http://bit.ly/bPXQIA

It links to an article entitled “Is She Really Ready to Work?” by Tamar Asedo Sherman, who is presumably some sort of vocational rehabilitation counselor or job placement specialist. Sherman describes her interaction with “Patty”, a client with a “disability is of a physical nature, with swelling of her legs making it hard for her to move around and making her a potential candidate for knee replacement surgery”.

Sherman goes on to explain that she has practically bent over backwards trying to get Patty a job by helping her with resumes, job applications and contractions, but Patty always seems to have an excuse for not helping herself: her computer is broken, her legs are swollen, etc. Sherman concludes the article by congratulating herself for setting Patty up with a one-day gig as a phlebotomist even though Patty had to cancel at the last minute. In fact, Sherman blames Patty for not being “ready to work”:

Maybe Patty’s disability was such that she really was not able to return to work at that time, I thought, even though she wanted to. Many people are in denial as to the extent of their disability. Was Patty one of them? … If you were in my place, would you think Patty was ready for work?

This article infuriated me for so many reasons. The first is the condescending attitude that Sherman took towards Patty. She judged Patty based on an able-bodied standard and failed to think about what else might be going on in Patty’s life and/or health that might be impeding her ability to work. Does she have invisible disabilities or physical issues that could impact her health on a given day and are too embarrassing to tell a snobby voc rehab counselor about? Since this is a website about spinal cord issues, I can think of a few medical things I’ve got that I sure as heck wouldn’t talk to a voc rehab person about.

Second, the one-day job Sherman sent Patty to was for a phlebotomist at a health fair. Let’s think about that: Generally, people who work at any kind of fair have to stand up all or most of the day and every single phlebotomist I’ve seen has done his or her work standing up. Also, I have problems with my legs swelling since my spinal cord injury and I can imagine how painful they would be after standing around at a health fair for an entire day. I am sure this is something that Patty thought about when she backed out on the job and Sherman did not.

Third, Sherman wrote this article from her perspective: how hard she worked to get Patty a job, how little Patty contributed to her job search and how ungrateful Patty was to her (Sherman).

How could this have been handled better? I would have loved for Sherman to have made Patty’s job hunt more Patty-centric. Rather than simply chalking Patty’s unemployment up to depression or lack of initiative, Sherman should have taken the time to ask more questions: Are there any other physical issues going on? Does Patty have any environmental or lifestyle barriers to employment? (child care or other caregiving, appropriate clothing, transportation, etc.) And yes, someone, probably not Sherman, should ask Patty if there are any psychological barriers to employment. This is the last step, not the first, though.

There are so many barriers to employment for people with disabilities and/or chronic illness that it is insulting and discriminatory to simply chalk it up to depression and laziness. There were so many ways for Sherman to help her client, Patty. Unfortunately, she failed miserably.

If you have time, please read the article. Then come back here and let me know what you think in the comments section below. Thanks!

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I am not an expert on disability.

I have been hearing impaired my entire life and worn hearing aids since I was three years old. I have lived with hydrocephalus and Dandy-Walker Syndrome since I was diagnosed at five years old. Four and a half years ago, I became quadriplegic after a freak illness. I’ve recovered my mobility but I still have many health problems.

I’ve told my story over and over again not to bore my loyal readers but because I believe it is vitally important to tell my story. I want to put a woman’s face on spinal cord injuries and paralysis.

I think the best way to help other women with paralysis and spinal cord injuries is to tell my story, to demystify this crazy injury. I believe – I hope – that by speaking out, I am empowering others.

However, this is only my story. I would like to hear yours. If you are a (cis or trans) woman with a disability or a chronic medical condition, I’d like to interview you for this blog. I am interested in what it’s really like to live with your disability/condition on a daily basis, how it affects you, any discrimination/barriers you face and even what you like about living with your disability/condition.

If you are interested in sharing your story, please email me at danine@danine.net. I will be happy to work with you to conduct the interview in whatever format best meets your needs.

Cartoon originally from WillDrawAnything.com

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