What In the World Is A Self-Advocate?!

By, Renee Wood

When in doubt, google!  The definition of a self-advocate came up as, “Self-Advocacy is learning how to speak up for yourself, making your own decisions about your own life, learning how to get information so that you can understand things that are of interest to you, finding out who will support you in your journey, knowing your rights and responsibilities, problem solving, listening and learning, reaching out to others when you need help and friendship, and learning about self-determination”. (http://www.wrightslaw.com/info/self.advocacy.htm)  Ok, that’s pretty much what I have been told, but what American citizen doesn’t possess this right to stand up for themselves and say what they desire in life?  Why is this title bestowed on those with I/DD (Intellectual and Developmental Disabilities) as if it were to be earned like a Ph.D!  Better yet, who decides if I get this title or not?

I find this term very narrow and even offensive.  It has become a pleasant alert signal to warn that “People with I/DD are coming”.  Even worse, it nullifies everything else we are, and have done in life, and often separates us from those with which we may have something in common.  Out of all the things I have strived to be known for; a professional woman, very well educated, Chair of Olmstead, past chair of DD Council, speaker, author, blogger, an activist, a wife, a stepmom of 2 adult daughters, one of whom lives with mental illness, and whom I am an advocate with/for, a Christian, and an advocate for ALL people, to primarily render me as just a “self-”advocate, is horrendously offensive to me.

I know and understand there are times when we want people who have I/DD to be at the table and we need a “word” to collectively invite them.  I am proud to be a woman with Cerebral Palsy (CP) – that is just part of me.   CP is a disability.  The word “disability” covers the gamut of cognitive, mental, physical, sensory, or emotional impairments that renders one unable to fuction in typical society without some accommodation.  I own the word “disability” as an inclusive term, just as I do the specific term “CP” as just part of who I am.  I don’t mind being referred to as a stepmom with a disability, or a professional woman with a disability, etc.  So let’s refer to people with a disability in what they do for work (a custodian, or a community job seeker”), or in what they are passionate about (“a rocker” or “a rapper” or “crocheter” or “an activist” or “someone’s lover”).

However, the word Developmental Disability was attached to me in my early 40’s, and it has to do with how I receive my services, and how those services are funded.  The DD disability category has to do with the age of the onset of my disability, but it has no bearing on how I function compared to those in the big D category.  I use the term strictly for funding of my services because I am offered no other choice.  I don’t find the word DD offensive as such, but I find it a way of segregating those types of disabled people, from these people with disabilities who are theoretically closer to typical people.  The offensive part of using the term “DD” is that it portrays the image of “Separate but equal” system, which creates the notion that, these individuals with DD are so drastically “different” and maybe even “lacking”, that they can’t even be serviced in a system for persons with typical disabilities”.  This makes the term “DD” exclusive rather than inclusive among people of all disabilities.  It elicits more pity from people knowing that the disability occurred as a child or youth, and renders us “more special”, as if eternal angelic-like children!

Do I think people with all types of disabilities should learn self-advocacy skills?  Sure!  I even know many non-disabled people who could benefit from learning these skills.  But for those people who receive services through the DD system, learning self-advocacy skills in a cultural environment of extreme paternalism and oppression is basically useless, and only creates more frustration, confusion, and angst for the individual.  So here the individual went through this wonderful training on how to stand-up and say what they want.  They are bestowed with this “title” (the only title most people with DD will ever have) of “self”-advocate (which essentially they always were, because all Americans are/or have the right to be, “self-advocates”), and they go to their supportive living home, group home, or ICF and declare, “I want pork chops for supper and I want to watch Monday Night Football tonight”!  But it’s business as usual in their home.  They are served canned ravioli for dinner, given their evening sleeping medication at 8:30 and are asleep by 9.  The next day staff brags about what an amazing self-advocate “Ted” is.  Is this the way it always goes?  No, but more times than not, this is the scenario.

To conclude, I will address you, people with disabilities (I will no longer separate you as people with DD, except when discussing funding streams), I emplore (beg) you, don’t accept someone granting you with the title of “self-advocate”.  You are already a self-advocate.  You have had that right, as an American citizen from your birth.  You have always had the right to speak for yourself, and to have your wishes be acknowledged and honored within a reasonable timeframe.  Advocating for yourself and others, is not the top of the pyramid, but rather it’s just the base to start building from.  Get training, if you desire, on becoming a better advocate with classes in assertiveness training (more ways of saying what you want), and on self-determination to make that pyramid base stronger to build the life YOU want on.  Climbing higher on that pyramid is knowing who you really are in life, and discovering your true titles – which will be many!

No one will explain this to you, but I will tell you like it is.  People with disabilities live in “oppression”, especially people like us who get our services outside the mainstream disability system.  What is Oppression?  It’s like you know how to climb that pyramid well, and you’re doing everything correctly, but the reality is, there IS invisible oil and goo all over our pyramid and it makes climbing so much harder.  Then we start to doubt our ability to climb and give-up, and let others take control of us and our lives.  Who put the oil on our pyramid?  One can only speculate (guess), but whether it is intentionally slimed, or sliming our pyramid has just become routine without thought (systemic), the result is the same “to hold us back”.

It’s not important to figure out right now “who” or “how” sliming our pyramid came about. What is important however, is to know if your pyramid is currently slimed.  One way you can tell is, if in your heart you know you’re saying and doing the right things, yet you aren’t getting what you want in life, and feel no one listens – then your pyramid has definitely been slimed with invisible oil and goo!  This means we need to get stronger and wiser to find ways through the oil and goo.  We do this by finding people who will support us as we climb, not climb for us and take us where they want us to go.  Don’t lose heart, for the knowledge that our pyramids were slimed, only makes us know we’re ok, it’s the oil and goo holding us from climbing as fast as we know we can.  We will overcome through knowledge and perseverance (not giving up, but keep trying no matter what).