By, Renee Wood
A friend challenged me to write a blog on strategies to overcome the oppression that pity inflicts on people with disabilities – especially those diagnosed with a developmental disability (DD). And to explore if the strategies of the Civil Rights Movement could work, or if new strategies need to be developed. I’ve been staging “sit-ins” since age 5, although they were referred to as “being stubborn” then, if someone would have analyzed when these “fits of stubbornness” took place, it would have become clear, it was over some injustice imposed on me. My strategies changed through the years as; my environment changed, I made many friends, colleagues and acquaintances with whom I was always genuine, and also became empowered by my personal triumphs over systemic oppression. Also, as I grew in wisdom, I discovered the power of words, documentation and telling everything! But I will be the first to admit, there is “no one strategy to break these chains”, but everyone needs to do something. Strategies to fight oppression change, as the times change, and the situation changes. Let’s see what we discover.
To prepare for writing this, I watched all 6 episodes of PBS’s “The African Americans: Many Rivers to Cross”. This was an historic look at the plight of black people from 1500 to 2013. Some things stood out really clear, and can relate to the plight of people with disabilities as well. As people gain more rights leading them closer to freedom and equality, techniques to oppress them also change. When slaves were freed (slaves were black people) Jim Crow Laws were enacted creating “Separate but equal” status of blacks which is segregation. One way this was fought was someone documenting and contrasting black schools compared to whites schools. This clearly showed they were not equal systems.
First, I would point out that today we have “Jim Crow Laws” segregating people with disabilities thing such as; “Special Education” , even when this separate education takes place right in the same classroom with non-disabled students. There is nothing “special” about “special ed” except it’s a substandard educational system where teachers get paid more, for less results, and sets that person’s direction of subjugation to non-disabled people for life! Disabled students are systematically taught they are not equal, less is expected of them, and they are a burden that the education system is forced to have there. Shouldn’t teachers be taught to teach all types of learning styles? IEPs (Individualized Education Plans) are archaic, and scream “treat me different”, rather than; “look at me, learn who I am, and naturally accommodate me without all the fuss”. “Individualized” means “separate “and “apart from”, disabled students are not part of the whole. We also have parents who are being convinced by this same educational system that this is the only way to educate their child, it is the law, blah, blah, blah. In my thought, there’s only 10 laws that can’t be changed, and those were written in stone 10 thousand years ago, but we break most of those when they’re inconvenient, so why parents fall for this I can’t say. If I had a child who had CP, or Down Syndrome or something, I’d just register them like a child without a disability, and take them to a regular class the first day.
Second, we need to document the difference between special ed and regular ed, and show it to the public, so they can see it’s not equal. This needs to show these non-equal educational systems set the initial pathway for that disabled child towards the road of separation, subjugation, poverty, subservience, and servitude for others to make money off. This method of documentation worked to create change when they secretly documented what was going on inside the institutions such as Willowbrook. However, institutions watched people’s reactions to the documentaries, and learned that what caused the most horror was; the squalor people with DD lived in, the lack of food, sitting around unclothed, poor hygiene and very little medical care. Institutions also noticed no one cared that these people were subjugated to the institution’s authority, routine, and didn’t have a life! So the institution bathed them, fed them, cleaned the floors, medicated them, and put fake flowers up, but the same routines exist. However, in today’s reality, video documentaries would be risky with HIPPA which makes it illegal to video to protect patient’s privacy. Yeah right, any thoughtful person knows whose secrets HIPPA is really designed to protect!
Another method that blacks used to gain freedom and break with oppression is self-separation. They built their own towns, owned their own businesses, governed themselves. This seemed to work, well until whites seem them succeeding, and burnt their city down. So I would suggests, the third way people with disabilities break oppressive bonds is to help one another in that, why don’t we build home care agencies, job coaching agencies, social hang-outs (what’s known as “day-habs” now)? We could hire those who are physically disabled, and who have the education and technical skills, to run and manage these businesses, and hire those who are intellectually disabled, but physically able, to do the direct care. Why let non-disabled collect all that government money for “caring” for (subjugating) us, when, if we organized, we could benefit? We’d be much fairer about wages of direct care workers too.
Along the lines of people with disabilities assisting one another, I’m starting to have second thoughts about this whole separating people with DD thing into “small groups far apart from one another” within the greater community. Initially, I was all for moving people into small settings within the greater community, but now I’m questioning this, not because I don’t think we, as people with disabilities, have the “right” to live within the greater community if we choose, but to say it’s segregation if we freely choose to live in a group setting with four or more other people with disabilities, makes me suspicious in that it might weaken us! “United we stand divided we fall”! I mean it’s not like we can jump in a car and go see one another, because our staff can make up some lame excuse not to take us to visit one another. We’ll be even more isolated and vulnerable to what the system wants for us than we are now. However, living with more than 2 to 4 people would have to change DRASTICALLY in its current structure and policies. People with disabilities would have to be TOTALLY in charge as well as own that environment– the system would have to be turned totally upside down, and I don’t think that’s possible. Too many financially well off non-disabled people would stand to lose too much if this were to happen.
There’s many other techniques to break these systematic chains of oppression that I could explore, but ultimately I don’t think people with DD with ever systematically be free until the DD system collapses financially! I realize this sounds extreme, but there’s just too much for provider agencies to gain from “caring” (owning the care of) us. Some of our parents will unwittingly help bring about this collapse by demanding more and more services (more than their child reasonably needs or desires) out of fear that something negative may happen.
How do we collapse the system? That is so simple that it’s already being done by the most disabled among us out of frustration at not being listened to, and granted the freedom they desire. They are acting out by frustrating direct care workers using their disability to be as helpless as possible – nothing like letting go of one’s bodily functions to show how fed-up one is. But they are doing this as individuals, one here, one over there, and these costs are absorbed by the system while the providers profit. We should join our brothers and sisters in these tactics. The system can’t give us all one-on-one 24 hours per day care – they’d have to know these behaviors are intentional, and finally back off, and listen to our demands! So, I’m not talking about doing anything “illegal”, just refuse to eat unless you are fed by someone. Suddenly be unable to walk, or use restroom independently, or get in and out of bed by yourself. At the workshop, preform no tasks without hand over hand assistance. If we planned this in unison, my God, we would see the fastest change in history! If fact, I’ll wager, if we got the Ohio DD community together, came up with demands, and a start date that these tactics would be employed, if demands were not met in a reasonable timeframe, we’d see some hustling by the authorities to seriously listen to us and break this oppressive regime. We would probably never even have to actually go as far as setting in motion these tactics, as long as we were committed to doing it if necessary the threat would be real!
The above tactics are a pipe dream (although I have no doubt it would be effective). I know I’ll never see this systematic change of oppression of the DD system in my lifetime, so although I use its money for essential services, such as 2 hours a day of personal care (I probably require 10 hours per day of personal care services), I try not to become engulfed in these services. I am however engulfed in changing the system. I utilize less services to remain effective in my work to change this system because I realize if I become too dependent on services, then my voice will become absorbed in the system, and I would have no voice for it to here. If my dear husband passes before me, my close friends are acutely aware that although I want care to preserve my life, if I have to sacrifice my freedom in order to receive that care, I’d rather die of neglect and remain a free person.