Only Anecdotal

Last week I wrote about “This American Life” and the story about SSDI. My reaction was to applaud the exposure, the understanding of an invisible population of people with disabilities who are unable to work.

Many in the disability world, though, were not so generous in their view of this story. A number of organizations have pointed out the problem of lumping disability benefit programs in with welfare. They point out how incredibly difficult it is in many cases to get the much-needed assistance that SSDI and SSI provides to individuals and families, and that the program did not adequately reflect this. And I noticed that the portrayal of medical insurance did not tell the whole story, either. (It takes two years to receive Medicare for most SSDI recipients; Medicaid coverage is immediate for those approved for SSI.)

The truth? It is incredibly difficult to battle bureaucracy, no matter what the circumstances. It involves entering a world that seems entirely isolated from the official story, and it sure as hell does not come with a guidebook.

It hardly matters when the word “disability” comes into play; as soon as a disability affects any aspect of life, i.e., prompts the need for assistance or accommodation, the disability bureaucracy starts churning. It is impossible to move forward in life without going through it, and sadly, going through it is a brutal, demanding, demeaning exercise in proving to the rest of the world that it matters, that a person matters.

It happens in hospitals and doctor’s offices, in schools, in employment, in housing, in transportation, in everything–where suddenly a person with disabilities suddenly has to ask permission for access to everyday activities. It shocks and terrifies people who have never been through this process–and not without reason. It is not the person, however, who is shocking or terrifying; it is the system itself. No one should have to prove the need for human interaction–the right to be a part of the community–and all the things that may unite us as human beings.

What I found compelling in the NPR story was the recognition of people who are so often left out of the big picture, whether it be economic, or anything else. The story, while incomplete, has started conversations.