Who are Self-Advocates?

Recently there was a “Proclamation for the Dignity and Rights of All Human Beings” circulated by Allies in Advocacy and Spokane County Parent Coalition.

I have real concerns about documents such as this, supposedly written by self-advocates.  Self-advocacy is important and empowering but not when it assumes to speak for all.  There are so many people with developmental and intellectual disabilities who cannot speak for themselves and who would not agree with or be capable of much of what is written in this document.  I would like to know how self-advocates address the issues of those unable to speak, unable to reason, unable to process thoughts in a coherent manner.  With self-advocacy even more of our vulnerable  loved ones are forgotten.- assuming the self-advocacy groups speak for all people who have developmental disabilities.

In addressing these groups I would be so glad to hear how they incorporate the needs, desires and choices of those less able.  How do they address choice? How do they address those who leave the choices to their guardians?  Just because a guardian is making a decision does not mean that they did not listen or take into account the needs and choices of the individual.

Yes, risk taking and the opportunity to fail are important to learning – but as a healthcare professional and guardian, I do believe that there is a fine line between allowing one to fail and allowing one to harm oneself in the process of risk taking.  Some people, regardless if you think they are capable of making sound decisions, are not able to do this and do need to have a guardian make decisions for them.  This in no way takes away any of the human dignity of the person who needs this support – rather it honors their abilities and inherent dignity.

Just as self-advocates do not want people making decisions for them, as a guardian I do not want self-advocates making decisions for my son.  My son would not agree with many of the statements in the proclamation and would not understand 99% of what it even says.  In complaining about decisions being made for them and how they don’t like things, they make decisions and discriminate against those who are more vulnerable, those who cannot speak for themselves.  This seems a little hypocritical to me.

Self-advocates say they do not want to be labeled and do not want to be called special, do not want to be perceived as needing anything more than anyone else.  I’m curious though, in this line of thinking, without having adaptations and specialized equipment and supports, how would they be able to involved in the community as much as they are?  It can’t be both ways.  Many people with developmental and intellectual disabilities do need “special” treatments, equipment, supports and adaptations to participate in community life and to have a good quality of life.  Why would self-advocates deny this?  I am so grateful and appreciative of the special attention and supports my son receives.  These have enabled him to live a well-adjusted life and be happy.

Advocacy does not mean playing the victim and telling others that you deserve something.  Advocacy is not complaining about the good that others may receive.  Advocacy is not pitting one vulnerable group against another.  Advocacy is not placing blame on other populations.  Advocacy is not self-centered.

Advocacy is working in a collaborative efforts to make things better for all – looking at innovative and constructive systems and methods and being appreciative and thankful for supports.  I do not see this happening in the self-advocacy movement  – if it is, please let me know.





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