by, Renee Wood

Most people know I have an issue with the term, “self-advocacy” or more specifically, “self-advocate” in that these terms have become meaningless, and now are synonymous with identifying a person with a Developmental Disability (DD).  If you would like to read more of my perspective on self-advocacy read my blog What is a Self Advocate.

For the purposes of this blog, I will use the familiar term of “self-advocacy(ate)”, but what these educational programs should be called is “Assertiveness and Rights Education” (I prefer education rather than training – we educate people, we train animals.  For many historical reasons that I won’t go into here, this language change is necessary within the DD system).  Within the DD system itself it is frustrating to get a true self-advocacy organization started, and is it even possible for a system that systemically oppressed people for so many years, to suddenly be psychologically capable of teaching these people, that they’ve oppressed, and still control their services, about their rights, how to assert themselves, how to be self-confident and stand up for their wants and needs?  Eighty percent of the time these individuals are going to be asserting their desires within the DD system itself – the one that systemically oppressed them over the years!  It is a siloed system where one’s voice rarely gets outside.

My point is, if one has a grievance, it just gets heard by another non-DD person within a different level of that silo. Although the upper levels in the system may be well-intentioned, most have acquired a set of systemic biases about those with DD, and often agree with lower rulings.  It’s almost impossible for a person to advocate for themselves within that siloed system.  For the system to claim they train people with DD in self-advocacy is mockery because it’s self-defeating to practice it within the silo.  This is because people with DD are mostly at the lowest level in the silo.  The image that comes to mind is slave owners training slaves how to be assertive and live free lives.  No matter how well intended individuals who provide DD services may be – I just can’t envision how that can work.

For minorities to exercise freedom, at the very least, they have to have control of the system they are in.  For example, Centers for Independent Living (CILs) are setup to serve people with all types of disabilities.  It is required that at least 51% of persons with significant disabilities are in all levels of staff, including middle and upper management, along with their boards.  Unlike CILs, the County Boards (CBs) which serve the 88 counties in Ohio, specifically for people with DD, may have a total of 5 to 8 people with DD serving on their boards throughout Ohio – and they celebrate that!  They should hang their heads!!! – Yeah, it’s better than nothing, but seriously!  And how many of these few board members are seen as “tokens”?  I have no knowledge of who these individuals are, and what role they play on their respective boards, but I can certainly see why they could be considered tokens.  People may think that because these people with DD are “tokens”, that they just go along with the non-disabled board members, either because nobody takes the time to explain what’s going on, or they feel intimidated seeing that they are the only one like themselves in the room?

When policy was being formulated that would require at least one board member, on every county board of DD, be represented by a person with DD, the CBs balked, citing one reason is that there’s not enough qualified persons with DD for these positions.  So how effective are these self-advocacy trainings if they can’t even prepare people to serve on boards that provide services to them?  Yet, these CB advocacy trainings want these “self-advocates” to serve on boards and councils in their communities.  Someone please explain to me how this makes any sense!?

The system also has a hierarchical structure where 98 percent of people served, are in the lowest level of the hierarchy.  This structure system is evident by; most people with DD live in situations where a non-DD persons are in charge over them, especially group living situations.  The system also sends them out to DD group work situations where workers with DD are paid sub-minimum wages, and again, non-DD are in charge of the DD workforce.  There are many examples, but these are enough to make my point, and it is hard to deny this obvious hierarchy where people with DD are at the bottom.  Where, rather than asserting for their wants and needs – they beg for crumbs!  Although the system may tell people with DD their voices matter, one learns very quickly where they truly stand, and how little their voice, or their opinions truly matter within their CBs.  The system regularly does whatever’s the easiest for the CB, and persons with DD are expected to just comply.

Solutions to Teaching People with DD about Their Rights and How to Assert Themselves (Self-Advocacy)

During a recent meeting, where many of the top advocates with DD in the State spent at least 45 minutes discussing how self-advocacy isn’t working within the DD system.  The facilitator then said something to the affect of, (as if nothing that was just said in the past 45 minutes had any resonance with them), We need to identify all the self-advocacy endeavors in the State (in the DD world) and sort out which ones are the best.  I believe I got whiplash my neck turned so fast in utter disbelief!  I challenged the facilitator with the conversation in the past 45 minutes.  They explained that, the grant we’re under (the reason for the meeting) charges us with this task.  Then they added, “Well the system already exist, you can’t just blow it up”!  Sometimes “discretion is the better part of valor”, so I was silent, and truthfully, the latter was more of a statement than a question.  Let’s see, a well-established system, that routinely; robs one of self-worth, destroys self-esteem and instills the ideology (by deed, rather than by word) that your functional limitations, make you less than those with higher functional abilities, and, in essence, says, “Please take your seat at the bottom, and we’ll care for you, and train you” . . . . we can’t, or shouldn’t just blow it up!?  I don’t cuss in public, but sometimes a certain word is the only thing that fits – so I say, “Yes, blow it the fuck up”!

How do we blow it up?  First, outside of the DD silo, we educate people with DD about assertiveness and their rights.  But not only do we educate them outside the system, but we also have advocates (outside the DD system) prepared to do individual advocacy with them, when the system is usurping their voice.  Even well-known “self-advocates”, what I would consider the best in the State, needed help advocating when their county board was riding herd over them.  I had 3 such advocates ask me for assistance in the past 6 months.  As a rule I don’t promote myself in this capacity, but when someone purposely seeks me out for advice and help, I will be there.  In all 3 cases the CB was blatantly lying to them and stonewalling them.  It’s difficult to convince someone that the people who are assisting them are lying to them!  But with some education on why what they were being told was just wrong, they understood.  Then I said, “Tell everyone you know, or even those you don’t know, about your story, and about what the CB is doing, and plaster it on FB”.  Once the superintendent of their respective CBs caught wind of it, things changed.  I like to think that the superintendents were righting a wrong because it’s the right thing to do, but I think they did it because they didn’t liked the publicity!  I was appalled that the best advocates needed assistance advocating.  What is the rest of the population going through?  That’s why we just can’t educate them and leave them, but we need to be available to stand with them when necessary.

Second, who should do this education?  Entities far outside the DD silo, but who understands the DD system in order to be helpful.  They should not be paid by local county boards, but seek grants or State dollars.  Entities cannot be beholden to the DD system in any way.  Ideally I would say the CILs should take this on.  But first there’s not enough of them to do this in 88 counties.  Second, there’s already angst between the CBs and the CILs, and since part of the program will be to advocate with people with DD to get what they desire, often times CILs will be going up against the CBs.  In the overall scheme of things, I don’t know if more division is prudent in this case.  So I don’t know who should take this on, I just know it has to be far outside the DD system.

Third, once people with DD are empowered and have others who have their backs, there needs to be a coup of the DD system.  People with DD need to walk in and take over their boards of CBs of DD!  People with DD will determine the board make-up.  They will demand adequate representation on all levels of CB staff.  They will be in charge of their system and no longer be the “green carpet” the system walks on.

This may take time, but blowing up the system can, and must be done!