In contrast to the vast majority of people with a disability, I have a degree of financial stability. Having a PhD from an Ivy League school certainly helps though my area of specialization, anthropology, is dying a slow painful death. While I worry about money, I am keenly aware I am lucky--very lucky. I own my own home, car, and more often then not have an adequate amount of work. I am concerned with the cost of my health care but know if I needed significant financial support my family would be supportive. This allows me to sleep at night yet I still worry. I don't worry about myself (too much). I worry about all the other paralyzed people without jobs, health care, education, and the financial resources needed to makes ends meet. Last night as I fell asleep I began to wonder how do other paralyzed people do it. I have been paralyzed for 30 years and began to think about how much I have spent on paralysis related products and services. My first thought was about my Roho Cushion. They cost about $350 and last two years. I have probably owned 25 to 30 of these cushions as they often do not last as long as advertised. The next biggest expense would be urological related. This includes catheters, tests and regular check ups with the urologist, antibiotics, etc. Add in wheelchair costs which are not too bad given the fact I farm out such work to anyone but a durable medical goods company and I shudder to think of the overall cost of my paralysis.
Am I complaining? You bet I am. But what makes the above worse for many is the inability to find adequate employment. And in this country no work means no health insurance. In this case, two strikes and you are out as in out of your home and into a nursing home. Scary thoughts and a fate I truly fear. I have been thinking along these grim lines since I read about what an abysmal job the Federal Government is doing at hiring people with a disability. According to the Federal Times, the number of Federal Employees with a disability in 1998 was 0.96% In 2007 the number was down to 0.92% In 2006 the entire Federal Government, that monster that dominates American lives, hired a whopping 1,300 new employees with disabilities but almost 2,100 employees with a disability left that year. I cannot help but speculate that the private sector hires even fewer people with a disability. Think about it this way: 12% of Americans between the age of 16 and 64 have a disability. Does any reader think even 10% of the work force in this country has a disability. Not a chance. I would think the employment number is quite like that of the Federal Government--less than 1% This is a national disgrace that is destroying lives. We Americans define ourselves by what we do. If you ever want to end a conversation with a person you barely know tell them you are unemployed. The respect factor is non existent. What bothers me the most is why? Why are people with a disability absent from the work force. Everyone I know with a disability wants to work. Many cannot find work. Some have given up. The result is personal devastation and the spiral downward is shockingly fast when you figure in the cost of being paralyzed.
Each year I teach I ask students at the end of the term how many paralyzed professors they have ever had. To date, not a single student has ever come across a paralyzed professor before me. This invisibility is a huge issue--we do not as a culture associate people with a disability as being professors, doctors, lawyers, business men or women, etc. That is we do not think of people with a disability as being productive members of society. i.e. workers. Thus disability is seen as a problem, one that must be solved. Disability is a problem but one that is social. Disability is very real social and practical problem that keeps people with a disability from entering the labor force. Start with a lack of mass transportation and housing then throw in the refusal to make basic accommodations at the work place. The result is rampant unemployment, a problem that has not changed in thirty years. Sure we have lots of laws but those laws cannot force the social change required to really empower people with a disability. For that to happen we need a social revolution, one I hope to see.