by, Renee wood
In December 2017 at their annual winter conference, The Ohio Association of County Boards of DD had power talks, on the question; “Who Do I Trust? Unfortunately, I did not get to hear how the speakers approached this question, but I knew this was their theme, and have been thinking now for several months about how I would answer this question.
To really answer this question one has to define “trust”. Of course, in typical “Renee fashion”, I have to take this question in its extreme to mean, “Who do I ‘trust’ to make decisions in my best interest if I’m not able to”? My initial true reaction is “no one”! First, that’s probably why I don’t have a durable power of attorney or living will because I know, as good hearted and genuine as my love ones might be, I can’t possibly tell them what I would do in the nuances of each particular situation. Only I can decide after hearing the nuances of the situation what I would do. No situation is black or white, and each might carry unforeseen nuances that could influence me one way or another, no one can know me that well, heck, I don’t even know what I would do until I hear the details. I may not always make the right decisions, but it would be MY DECISION, and so therefore, if it’s wrong, I’d have no one to blame but myself. If someone else makes a decision for me, and it’s wrong, I have to live with someone else’s poor decision and I would not be a happy camper!
Second, no one that I know at least, has the tactful, but ballsy-fight I have, to fight the entire world if necessary, to get what I need! But mostly to question everything, and trust nothing, until you are convinced those in authority are telling everything they know, and not trying to influence your decision with what they want. It’s funny, when I know someone is trying to pull one over on me and get me to do what they want, I respond, ”Ok, I heard you, but I still want this”. If they continue to try to white wash me, I just say, “I still want this – end of conversation”. I don’t know anyone who has the “bull-detector” I have, especially when it concerns my disability, so I really don’t trust anyone speaking on my behalf.
The disabled person comes by this lack of trust honestly, rather than out of some type of paranoid mental illness. When a person with a disability has listened to others talk disparagingly (albeit unknowingly) about their life, since the day they could understand the subtle (or sometimes not so subtle) meaning of words, the person with a disability starts to realize that others don’t value their life as much as the lives of those without a disability, and often times tried to manipulate the person with a disability into what an ablest views best for their life (many disability professionals are known for this). Therefore, the person with a disability either gives up, lives under ablest Rule and hopes for the best, or starts to devise methods to protect themselves from others – often from those who love them the most. This is because the disabled person’s loved ones, as well as many non-disabled people, have no actual experience of living life with a disability, and were also raised in an ablest society, so have a great deal of implicit bias about those who live with a disability.
Does that mean that people with disabilities and people without disabilities have no hope of entering mutually trusting relationships? Before I can honestly answer that, we have to first look at where people with disabilities are at on the journey to equality, and compare that with other minority groups on similar journeys to equality.
Although blacks and women still deal with inequality through oppressive and denigrative measures, they are way ahead in their quest towards equality compared with people with disabilities. Where people with disabilities are at today, could be compared to the days when abolitionist help black people escape slavery. Where people patted themselves on the back for having a black person work in their town at a low wage job. Where good Christian people would look up in the trees and marveled at how “tarrings & featherings” have decreased. Where good caring people who wanted decent treatment of blacks, still referred to them in differential terms such as; Negroes or even the N-word. Their implicit bias was that, being born black was an unfortunate inferior state of being but still deserved basic rights. This inferior bias was demonstrated by different schools for blacks, not allowing or frowning upon interracial marriages, or the “saintly” people bragging, “My girl is married to a real nice negro” – as if one has to explain Negroes are nice!
Furthermore, when it comes to love and reproduction, people with disabilities are even further behind in their freedom and equality in this area. Parents, providers and medical professionals, as well as ablest society as a whole, think absolutely nothing of breaking up lovers with disabilities – never allowing contact again! These same people take away the children of people with disabilities for no other reason than the person has a disability, and so therefore thought to be incapable of caring for their own children. What’s even more dehumanizing then ripping the lovers and children out of the arms of people with disabilities, is then these disabled people are expected not to grieve or show any pain or extreme emotion over the terrible injustice that just occurred! Even per se, it might be occasionally necessary to separate them from children and lovers, to expect them to just carry on with life as if it’s no big deal is the worst kind of abuse and torture possible. How can we ever trust when we’re not allowed to love whom we want, and our children are ripped from our possession when we do.
I haven’t even mentioned another violation of the person hood of people with disabilities. This is the absurdity that many are placed on birth control because of the likely possibility they will be raped, or sexually taken advantage of. Birth control doesn’t prevent abuse or rape, it just hides it by preventing a child to result. On one hand, we are discouraged or ripped away from mutually loving relationships, and on the other, society turns a blind eye to our rapes and there’s little recourse for justice at anything being done to prevent us from being someone’s toilet bowl. This inconsistency fosters confusion and a real lack of trust in those who say their “protecting us”!
Another issue is people with disabilities are conditioned to believe that they have less potential and will always be in need of non-disabled assistance. Today this conditioning starts by placing children with disabilities in separate schools for students with DD, or be in separate classrooms outside of their non-disabled peers. This is where they are trained to understand that they are NOT equal to their non-disabled peers, that they must be completely compliant with the wishes of non-disabled who are, and will always have control over them. If the student shows signs of non-compliance, independent thought or discontent that may disrupt control over them, then they will be put on a behavior plan (punished, in a polite manner of course) or drugged, until they comply with non-disabled behavioral desires for them. They will be equally trained to increase self-care as much as possible, while still insuring enough deficits so agencies can make a lifetime of profit off of them without wiping too many butts. This system of making profit off of trained helplessness has worked so well that now we have not enough human resources nor public money to care for what we created.
The sad part is, families with some very significantly disabled family members, rightfully wanted to ensure their family members were taken care of when they could no longer do it. Business greed ceased on this implicit bias that disabled people were inferior, and sowed the notion that NONE of people with disabilities could fuction without massive amounts of outside for-profit care, and propagated the fact that society had the duty to care for these “unfortunates”. Businesses convinced parents that they should expect everything for that “unfortunate child”. Kind parents in their grief, thought; “Yeah, why should my child ever work in public, or ever be alone where he might be at risk? He has a horrible situation and so ‘deserves’ everything the government will give”, not realizing that for some disabled members, they were creating more of a disabling and unfulfilling condition by expecting everything, rather than only what they needed for navigating life as independently as possible. Now, those who really need, have to do with less, and those who may have been capable of more independence, were conditioned to be more in need of services. Nobody wins, making it further difficult for me to trust.
Back to the question of; “Can people with disabilities and people without disabilities ever have hope of entering mutually trusting relationships”? I think back to the slaves who had to trust the abolitionists to help them secure their freedom, did they totally trust them, or just hope they got them to freedom? I think the best way to foster mutually trusting relationships is to keep communicating with one another. People with disabilities are still at the beginning of their quest for equality so it’s important to get their perspective in decisions, policies and laws. This means that people with disabilities not only need a seat at the table where policy and law are being made, but also at your kitchen table or the pub stool next to you. The fear of difference drives a wedge between the “us and thems”. This creates a mystery that our minds can’t help but fill-in.