The Difference Between “Potential” and “Privilege” in Disability

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"Potential" is spoken of with regard to disability, but often without an accompanying understanding of privilege that is present when a child with a disability "meets their full potential"

The word “potential” is used a lot when talking about children with disabilities. Phrases like, “focus on the potential”, “reach their full potential” and so forth are popular.

All children have potential (I wrote a post about that here). All children, with or without disability and inclusive of all genders and race have potential. Full stop. 

What I think people do not take into perspective as often as they should, however, is that of privilege.

Privilege and Disability

A child that is white and raised in an upper or upper-middle class home with educated parents will be afforded far greater opportunities than would a child of color, raised in a lower-income home. Having parents who are not educated will further strip the child of some of the opportunity to fulfill potential. This is true of any child in the United States of 2016. I’m going to say that income and education hold more importance than race, but we do live in a country that needs a campaign like #blacklivesmatter for a reason. White privilege is real.

There was an article in the Washington Post recently about parents of a young man with Down syndrome who “saw his potential.” The parents in the article sound fantastic, but the question remained: would a family of less financial means be able to do the same thing? Would other parents have had the health care or been able to afford to take their child to a top foot specialist? Would they be able to get their son custom-designed orthotics every year? What about the annual checkups at Duke?

My point is that the parents in this particular case saw the potential in their son and had the resources to help him fulfill it. But many families don’t have that.

Education and Disability

Education is arguably the fundamental game-changer for people with disabilities and their families. If a person with a disability is raised by educated parents – however and poor and of whatever race – they stand a chance of reaching their full potential by dint of the parent being able to work through the hoops of the system. The parent would understand the IEP process and have the ability to question authority and organize resources for their child. If the child receives a solid education, that child, when grown, will be able to self-advocate.

The question then to me is, how do we keep the ball moving for this? How can we work more effectively to make sure that all children with disabilities receive a good education and are able to self-advocate? How can we help their parents, if needed? How can we make sure that information and resources reach families of lower income, so that their children can reach their potential?

I don’t have real answers to this, but I suspect that active participation in the coming elections, and political presence is critical. What are your thoughts?

 

7 Comments

  • I think that a lot of the bureaucracy needs to be stripped back to make accessing services easier. Cut down on the time and effort of gatekeeping by having standardized accommodation documentation that can be reused across services and that only require updating if the prognosis is likely to change and then on a timeline set by a physician not arbitrarily by a bureaucrat. That at least might level out the accessing services when they’re available. There also needs to be more access to services in lower income areas. If the services aren’t there, all the bureaucratic savvy in the world won’t help.

  • Hello there. You raised very interesting point linking education with ability to self advocate. I live in Europe, in Post Eastern Bloc country. Self advocay here is a new thing. Sometimes people are chastised for trying top advocate for themselves by their educated parents. We have a lot to learn. Good and informative article.

  • While it seems like the obvious answer, I’d have to go with inclusion. However, with the added caveat that inclusion be something done well in public schools. Instead of further fracturing the public system with different private options (most of them only accessible because of privilege), outsourcing the best supports to private elements, and continuously tackling education as an individual battle, we could band together and make a real difference. But that would mean relying on an imperfect system for a while, much like the system many of the most vulnerable and least privileged children are doing now, increasingly so, in fact.

    And yet, I’m also resistant to the idea that filling one’s potential is unequivocally a good goal. I like opportunity much better.

    • Very good points. I recently became disabled, March of 2014. Just yesterday I met with my primary care physician and during the appointment I teared up. He had some questionnaire at the start of the appointment that asked questions basically probing for depression issues. So I stated I am not depressed either I am and always will be for the most part happy. However, I told him I never would have guessed how hard it is to be disabled. From my subsidized housing, to medical care to my ‘self directed’ home care services (which I used as an example to him, I finally got the adult butt wipes and he requested them last August). I took a one year leave of absence from my job when I was diagnosed with a benign brain tumor. During that time I want to say the brain tumor and going deaf has been the least of my issues. Doctors not listening to me caused some major other problems which resulted in my ending up in a wheel chair. Housing is yet another issue, I have yet to successfully use ‘mandatory out of pocket medical expenses’ even though I have provided years worth of proof and documentation, receipts, medical diagnosis’ etc. I have two college degrees and worked for over 30 years of my life, and I keep saying to HUD (where I filed complaint) and several others, what about those people who can’t navigate this? What happens to them? Even after eleven months of fighting with fair housing and multi family housing and them establishing that my landlord owes me back over four months of rent the HUD investigators still found the landlord is in compliance? I asked my attorney how did I not just win that? She said she has no idea but we will file rebuttal and go through chain of command and then we can file it in federal court. Had I not been trained in accounting I am it sure I’d have been able to navigate it. For instance if math was not my strong point. By the time it was said and done my housing provider said there were computer glitches, and software problems that’s why the calculations were erroneous. Then accounting themselves had problems. No kidding it was and continues to be a fiasco. Right now I have no idea as of yet how much my March rent is and it’s halfway through March. But they have a solution, you sign up for ach draft for your rent and they can enter the amount for whatever you owe! So in essence I won’t have to worry about that just call bank that day and see what is left and pray it’s enough to pay electric and food for month. Ha…so yes I wrote to my congressman etx. No lease if you have any other suggestions for what I can do or whom I can write to please advise I am willing to help. This has been an eye opening experience. When I said to my doctor, is it bad that I long for my old life? I never realized how hard it is to be a sick person. I was voting all these years and under the impression that there is this system for folks who need it, and maybe there is but no one can access it and he said wow, he had no idea and said he can’t imagine. He does know the medical issues because he is chief of staff of a hospital/clinic. I said yes it’s housing, medical and therapy you name it just another bunch of hoops to jump through. Thanks for this post!

  • This a huge point. Stephanie and I talk about this a lot! There is a huge chasm in the adult community, too. Potential isn’t an end point, in my opinion, those of us who have the chance to keep reaching up to our potential are a lucky few, and having safe, available, options are key for any of us. And more often than not, those options come at a cost afforded by far fewer than need it. Thanks for writing this – I hope people talk about it more.

  • I’m a white woman with cerebral palsy (a wheelchair user). When I was first diagnosed, in the mid-1960s, the prevailing “wisdom” was that I therefore probably was “mentally retarded.” What I actually was (at a little over 2 years old) was shy. The hospital’s psychologist misinterpreted my silence, though, and was about to recommend that I be institutionalized.

    He went back on that, however, after my mother challenged him (and I answered all the test questions correctly, when she was sitting beside me). I am grateful to my mother for challenging his authority, naturally. But now that I’m old enough to have some inkling of this country’s racist history, I shudder to imagine how that confrontation might have turned out if our skin were dark, or if we had been poor.

    I’ve had several people (health care providers among them) tell me I’m “lucky” to have C.P. without an Intellectual Disability as part of my condition. I try to tell them I’m lucky to have been born with the privileges I have. But I don’t think they really listen to me on that point.

  • Education … especially post secondary education is valuable regardless of career outcomes …. However, in North America at least … people still discriminate against persons with disabilities who have graduate degrees and professions… labour force participation rates aren’t much better for persons with disabilities who complete university degrees

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