Is there a monopoly on disability advocacy?

I’m outraged at the inhumane treatment that our most vulnerable citizens are receiving at the hands of some advocacy agencies and departments that are set up to protect these very citizens.  Not only is this segment of this population that is being ignored, their advocates that can speak for them are being banished from public discussions and stakeholder meetings.

There is a very active grassroots advocacy movement which  supports our most vulnerable citizens.  These people are dedicated beyond imagination, energetic, creative and innovative.  They have come up with many alternatives that will not only save money but enable more people to be served.  They want to share resources and expertise but their hands are tied by the monopoly that runs disability advocacy.

There is so much senseless nonsense being passed off as fact, yet if anyone questions it or asks for clarification, you are shunned.

I got a note from an executive director today in response to a question I had as to why I couldn’t comment on the public site.

This is his response:

Anyone is free to submit an article for consideration.  Articles we publish must be consistent with the values of the DD Act, namely self-determination, productivity, independence and integration/inclusion in all facets of community life.

We decided to have this blog under some editorial supervision because there is a lot of mis-information in the DD community which would not be helpful.  We hope to provide/publish information people can trust.

My response to him:

That is exactly my concern about this blog.  I believe that it is very biased in favor of those who can be self-advocates but does not address the needs of those who are not able to function at that level.

Within the population of people with developmental disabilities, there is a wide continuum of abilities.  Many of these people are not able to be their own self-advocates and where do these people fit into the scheme of this?  Many are in the community, many live in RHCs, but they are still people and their voices need to be heard.

When articles are written only from the perspective of people who can be self-advocates and what they are able to do and accomplish (I fully support them by the way) it really hurts the people who are not able to.  Also the family members of these people are made to feel like they are not the best advocates for their loved ones, that some agency “knows” better than the family.

These are my concerns and I don’t see how they can be addressed with out allowing something to be written with regards to them.

I fully believe that many of these agencies are good and do much great work but I also know that most do not advocate for the needs of my son and others like him.

How can we break down these walls and have a real discussion rather than being banished just like they are banishing our loved ones?


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