Disabled is not synonymous with Unemployable

I recently learned that I was losing my Medicare insurance coverage, and when I asked why, I was told that it is because of a change in my disability. This is very confusing, because I have had the same disability my entire life, and will continue to have the same disability until the end of my life; that's the weird and inconvenient thing about being diagnosed with a rare and incurable gene-based motor-neurological disease. So when I tried to correct that false assumption of a "change in my disability," I was told that my diagnosis didn't matter in this case. 

?? I'm sorry, what??

After feeling like I was in a Lewis Carroll story for a while, or like I was playing "Who's on First" with Abbott and Costello, I finally decoded that when the person was using the words "you are not disabled," what they actually meant was "you are employed." So in that context, they were correct: losing my medical insurance had nothing to do with my medical diagnosis, but it had everything to do with my job. Because I can and choose to work (on a laptop, from my own house) and I make a modest full-time salary, the government determines that I must not have a disability. 

I'd like for you to take a moment to reread that last paragraph and formulate your own conclusion about this reality, before continuing.

Because my conclusion to that is that our government is far more archaic and insanely discriminatory than a democracy in the 21st century has any excuse to be. 

I think this may have started back during the Great Depression, when Roosevelt initiated the Social Security Administration and the New Deal to help a country in crisis not waste away but have the support it needed to get back on its feet. People who were disabled, vulnerable, and disadvantaged who could not work started receiving benefits from the government. This well-intentioned plan has continued over the past century, but it is outdated. See, our country is not still in the Great Depression. Because of the ADA there have been tremendous advances in social and occupational accessibility; because of science and technology there have been tremendous advances in the treatment and quality of life for many disabled people; and because of education and industrial progress there have been tremendous advances in the quantity and variety of job options that are very possible for people with physical limitations. People with disabilities are often highly educated, with multiple degrees and personal experiences that make them creative, intelligent, and valuable assets to society. Why does our government still act like disabled people are incapable of working and contributing in positive - even essential - ways? 

My dilemma is that because I work, I no longer qualify for Social Security benefits, which are poverty level income. I don't really care about receiving a government check, because I'd rather work and take pride in earning money. But if I don't receive Social Security, I do not qualify to receive Medicare insurance, which has helped to pay for my medicine and hospital bills. And if I don't receive Medicare, then I lose benefits through Medicaid insurance, which have helped to pay for my wheelchair, respiratory equipment, and home health aid services. The solution that I have been offered many times over the years is that I should take a pay cut at work or stop working all together. 

The thing is, I don't want to stop working, or even work part-time for minimum wage. I have two Master's degrees - if anything, I hope to earn more money in the future, not less! But I know of a lot of people with disabilities who have chosen this route, because they cannot see another way. We must find another way, though... it is a disservice to our community and our country to hold back and not use our unique and exceptional gifts and knowledge for good. 

I hope the systems will change some day. I hope that health care - the legitimately necessary, life-sustaining kind - will become more affordable and reasonably cost effective so people don't need insurance that covers tens of thousands of dollars. I hope that the SSA changes its language and perceptions regarding disabilities. I hope that the government will incentivize disabled citizens to work in jobs with dignifying pay and hours and responsibilities, by supplementing their income based on their medical needs. 

But until then, I will remind myself that I am a bright, innovative human being who is going to figure out a better way!