Disability Shame Speaks:|
'I am alive and doing very well'
A dramatic monologue By Laura Minges
The majority of the time, abuse opens the door for me to entrench other messages of unworthiness, and finally such disconnection from their bodies that they feel they don't exist, belong to others, or deserve punishment.
They are still battling these messages in adulthood as they navigate living independently, hiring attendants or dealing with the many demoralizing aspects of staffed housing facilities.
My fingerprints are all over staffed housing. It is brilliantly, delectably flawed.
Oh, true, it is not as bad as it once was, and it isn't institutionalization, but the focus leaves large openings, and soon the foundation is permeated by my presence. Then I infiltrate the walls.
My approach cannot be detected, but the residents slowly grow depressed and feel trapped. It is assumed this is because they are disabled. Very few look at it as a byproduct of the powerlessness that comes with having the bare minimum done for them. After all, if they would only ask, they would receive. "Our facility encourages independence," they tell prospective parents and residents. "Our goal is to maximize client strengths and foster socialization. We pride ourselves on the provision of excellent, non-intrusive attendant care and community training."
All of it sounds wonderful. Independent living with necessary supports. Everything a person needs to succeed.
But beneath the veneer, there lies so much more. "Encouraging independence" is often a convenient excuse for attendants to do little, or perform work resentfully. Doing little gives the residents a chance to break out of the reflexive, dependent state it is assumed they must surely be in. If the residents are so bold as to express a different view, they are ignored and firmly reminded that the reason they are there in the first place is to learn how to be independent.
In this way, I make sure that no independence level is ever really good enough. They are not just there to live; they are there to learn vital skills. Just living is far too complacent and ignores their many needs. I make sure that no life coach, job coach, social worker, program manager, or parent acknowledges that not everyone needs skill-building. And for those who need these services, the presence of professional do-gooders can be deeply humiliating. "Just leave me alone!" many residents want to scream, but that's considered disrespectful. I relish that, and their sense of empowerment plummets.
Other things happen, too. Residents are told that non-essentials take time away from others who may really need something, but the reality is that if the facility is poor, all receive the same poor level of care, and the attendants are not doing any more for anyone else. They just float around, looking busy. And even if they are working, they are likely to gossip about how much other residents need or want. I love the anxiety this creates, the hierarchical "I'm better than they are because I do not ask for much" belief that results.
Rip. Rip. The sound of a community torn apart is always such a melodious one. But of course, that's not all. I could not possibly stop there. Destruction of community is but a fleeting pleasure. Self-doubt is my real prize. And I savor it as soon as substandard care is blamed on the residents. After all, they did not say they needed the things everyone else does for themselves done for them, so how can they be angry? "How can we help you if you don't tell us what you need? You know we're always available to you," the staff implore. This is just the fertile ground I need to reinforce guilt and silence.
Then there is the matter of work. They are told they should get a job, but often not provided the supports to get one. Many housing staff members see nothing wrong with them having no help to go to the bathroom for eight hours or more while at work. It's simply a part of adapting to the real world.
And society sees this as natural, a consequence of disability. Of course, no ambulatory person would do this. But they don't have to, and so it barely causes a blip on the social radar screen.
In fact, if people refuse to work without any physical care, it is assumed they do not want to work. They are lazy and don't want to break out of their state-subsidized gravy train. After all, there are adult diapers and catheterization. It's a piece of cake to fix. Never mind that the diapers usually leak and reek. Never mind that catheters are invasive.
Never mind that catheterization is often put in the hands of unskilled workers. Since many disabled people say they are easier, they must be the answer for all of them. Everyone knows they are all the same, regardless of disability.
For many, the hardest thing about living in staffed facilities is what they perceive as the power imbalances. I often visit a young man who says, "The staff here says you should think and speak for yourself, but when you do, they get angry. They don't know what to do. It freaks them out and they want to remind you that they are the ones in control. As if you don't know that already."
Then he laughs to cover his frustration. It's a common way to express anger without appearing bitter.
Yes, there are disabled people who begin to see that the devaluation of people with disabilities and their experiences is very similar to the devaluation that led to the civil rights movement. This angers them, but they know they must smile and express gratitude even in their most irritated states. When they grow tired of this, I play with their guilt, making them feel condemned for being human and furthering the stereotype of the bitter disabled person. The bad disabled people. The demanding ones who take advantage and aren't content, always wanting more.
No one really notices that these "demanding ones" are not bound by bitterness, but common experience. If it were not for them, those with disabilities would have much less. Yes, they can be bitter, but they are not homogeneous. Everyone says they just complain, that their demands are unrealistic.
After all, the disability experience is solely one of physical difference, and physical difference requires specialized response, not civil rights.
Most disabled people can't even understand civil rights, anyway.
And no one is against the disabled. They aren't really discriminated against, and even if they are, it's not that bad. Everyone wants to help disabled people. It's just too bad they can't see that.
No one wants to keep them down; it's just that their need for access and work is unreasonable, and makes everyone have to pretend their disabilities don't exist.
But of course, they are disabled, and so they have to be accommodated. Expensively and with no benefit. How could the benefits ever possibly outweigh the costs? They can't do very much and everyone has to pretend they can in order spare their feelings and be politically correct.
Twisting the truth is so empowering.
Go ahead, Pride and your followers. Try to turn eons of marginalization to visibility and power.
Try to argue that the disability experience is as much a social construction as a physical reality.
Most people already think you're ridiculous.
People don't look at the disabled as a minority group.
And I hold so many in my clutches it's a wonder you don't just give up.
It will take a long time for my current charges to join you. Some may never meet you, never figure out how to embrace you. Many will dismiss you as farcical.
Mark my words.
But don't let that stop you.
I'll be right behind you, rejoicing in the fact that disabled people still have not learned that community is my only true kryptonite.
You may empower them during the day, but it is I who will be there when the excitement ends and the lights go down.
It is I who will enter their homes with the county workers who demand to know every detail of their disabilities so that they get the personal care hours they need. It is I who will make them retreat from battles they would rather fight, making them see all those resentful faces in their minds' eye, all the ones who call them troublemakers. I will see to it that when they advocate well and are heard, they will be seen as pushing the boundaries of the client-worker relationship. And I will fill their heads with fears of losing their services. They know it's a delicate balance, after all. One whisper and I will have them convinced they overreacted.
No one is stopping you.
But no one except those disabled people and their friends is taking up the idea that disability is sociopolitical.
I can't help but wonder why that tells you nothing.
But I will be watching with interest.
It's my job.
Posted February 25, 2004
Laura Minges, a social work intern, is a freelance writer and public speaker specializing in disability issues. She can be reached at firstname.lastname@example.org
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