Magazine article The Exceptional Parent

Whose Choice Is It and Where Is the Diversity? the Following Letter Was Sent as a Comment on VOR's "When Equitable Does Not Mean Equal: Respecting Diversity and Choice" (October 2013, EP Magazine)

Magazine article The Exceptional Parent

Whose Choice Is It and Where Is the Diversity? the Following Letter Was Sent as a Comment on VOR's "When Equitable Does Not Mean Equal: Respecting Diversity and Choice" (October 2013, EP Magazine)

Article excerpt

Dear Sirs:

It is very interesting when an organization that does not believe in choice, diversity and equality uses those words to describe their principles. Their very name, the Voices of the Retarded, denotes antiquated language that does not reflect respect for people with developmental and intellectual disabilities.

The only choice the VOR is referring to is the choice to live in an institution. And, according to the Merriam-Webster Dictionary, diversity means "the quality or state of having many forms, types, ideas, etc." and equality means "the quality or state of being equal: the quality or state of having the same rights, social status, etc." The concepts of diversity and equality could not be further removed from the reality of institutional life for people with developmental disabilities.

In a recent article, the VOR played hard and loose with the intent of the Olmstead Decision and the DD Act. If read in their entirety it is obvious that both the Decision and the Act support, condone and even insist on community living for all people with developmental disabilities. If the reader wishes to use both documents as a cook book and take little pieces from here and there to support their point of view, it is easily done, as it can be done with most documents. However, this methodology does not take away from the fact that the authors of the Olmstead Decision and DD Act believe that all people with developmental disabilities belong in local communities, not hidden away from society in institutions.

Furthermore, it is not 'misguided ideology' to believe people should live free from segregation. In fact, it is a basic human right, and our cultural heritage, to live our lives as free from isolation and restraints as is humanly possible. Just because someone is born, or acquires, a disability, that does not change the rules. Everyone must live alongside everyone else in a regular neighborhood, enjoying their community to their fullest extent. This is what is called diversity.

As a parent of a young lady with developmental disabilities I can honestly say that my 'choice' is not always her 'choice.' There have been many times in her life that I have held her back because I was concerned for her safety or welfare. I thought I was doing what was best for her, when in fact she wanted to stretch her wings and fly a little. But in letting go I was allowing her to experience things that had not been open to her while I was trying to protect her. Of course I made sure she was safe to the fullest extent possible. But I had to let go, as I did for my children without disabilities.

The membership of the VOR is not people with developmental disabilities, it is usually family members. When they write and talk about choice they are talking about their choice. That is, the family member's choice. I am not doubting that they feel they are making the right choices for their family member, and the other members of their families, but surely they cannot believe that being isolated in an institution is more satisfying or enriching than being part of a community.

Many times throughout my 40+ years working with people with significant disabilities I have been astonished by the understanding people have about their circumstances. I am constantly reminded of Bonnie, who I met early in my career in a nursing home in Texas. She was very involved physically and medically and was considered by the staff who cared for her to be nonverbal and lacking in interaction with her environment. During one holiday season she very distinctly whispered to me that she wanted to go home, she spoke to me. I have never again underestimated the wants and needs of people with even the most significant disabilities. Often we have to watch closely for clues as to their wishes, but if we take the time to do this we may be surprised to learn what it is they seek from their lives.

There are formal research studies and anecdotal reports that show that people with developmental disabilities thrive in the community. …

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