Held down by red tape, not disability

I’ve never been able to walk. Even with a motorized wheelchair, the way I move about is limited. All my life, I’ve known that my physical body isn’t my greatest barrier to equality: society is. 

In an effort to change this reality, I got an education. After receiving a bachelor’s degree, I went onto law school believing that being an attorney would somehow give me the tools to improve not only my life, but the lives of others as well.

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Recently, I’ve been confronted with the stark reality that laws don’t guarantee equality.  My awakening started when I was offered a job with the U.S. Department of Justice in Washington, DC. If a perfect job did exist, this was it. The opportunity to use my skills and expertise to assist individuals with disabilities in achieving equal opportunity in the workplace was more than just a worthy pursuit, it was a passion.

I soon learned that this opportunity would fade away – a casualty of outdated laws and programs that foster dependence and oppression rather than independence and freedom.

Because of the extent of my disability, I require substantial assistance with many of my activities of daily living. This is expensive and if you’re poor enough, Medicaid pays for these costs so long as your assets, for a family, don’t exceed $2000 a month. For me, because the cost of my care along with my other medical expenses exceeds my income, I remain eligible for Medicaid in Washington State.  However, these programs don’t transfer between states and as such, the eligibility and services that are offered vary. In my case, the state of Maryland told me that I would have to pay $114,000 a year toward the cost of my care, leaving me only $10,000 a year to support my family. What’s more, there are waiting lists and citizenship requirements in order to receive these services.

Maryland bureaucrats told me they were sorry for my predicament. They even made this apology with a staffer from Sen, Maria Cantwell’s (D-Wash.) office on the phone. And, in an attempt to console me, I was told not to despair – that by already being successful, I had “won”.

What exactly did I win? Since when does winning include being shackled to one state and unable to pursue other opportunities? Since when does winning mean choosing poverty just so I can get out of bed in the morning?

As difficult as this has been and is for me, the disappointment goes well beyond me. In this journey I have encountered others who have experienced similar results. These outcomes weave an unacceptable commentary into the fabric of what is called the disability rights movement. Simply, this quest for equality leaves dignity and self-determination hanging perilously at the whim of regressive government programs. And in doing so, they stand in direct opposition to the cultural premise that was affirmed long ago – that separate is not equal.

I choose to believe that with every sunset comes a new day dawning, filled with new hope and new opportunities. I choose to believe that in every dawn there comes a reckoning with the darkness of inequality and oppression. I choose to believe that with every dawn there will be dreams fulfilled and with them, self-worth and dignity will be restored. I choose to believe that with every dawn a heart and mind can be transformed to embrace what should be instead of what is. Most importantly, I choose to believe that with every dawn the human spirit will transcend the night and move forward with bold and righteous indignation and toward the inherent freedom that we all so richly deserve.

In this dawn, we must demand more. We must demand that our elected officials build tangible ladders of opportunities instead of façades, which so easily crumble opportunities, dash hopes and douse dreams. Finally, we must educate and inform those in power that reliance and poverty as the status quo is no longer acceptable and as such, programs which promote these things must be transformed in both word and deed.

This dawn isn’t here just yet, but when it is, I hope we all will be standing in the light of equality together.

Murinko, 37, lives in Olympia, Washington with hi wife and two children. He has cerebral palsy.