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Putting Disability in Perspective

In one FoxTrot cartoon sequence, Jason (the annoyingly and excessively nerdy little brother) hands his older sister Paige a coded message. To read it—and in keeping with Jason’s modus operandi, the message is either a prank or an insult—Paige needs to solve a series of complex mathematical equations. As he hands it to her, Jason says: “Consider it an opportunity to prove me wrong.” To which Paige, whose strong point is not math, replies “About what?” One person’s point may be very much lost on another if the two people have very different understandings of, backgrounds in and approaches to a situation.

Earlier this week, I had the opportunity to share about Social Security Work Incentives and ABLE accounts at a local Center for Independent Living or CIL. There are a lot of large and well-known disability support agencies in my area, but the CIL is neither large nor as well known as it should be. Most disability service provision agencies are managed and staffed by people who may know a lot about disabilities from an academic and professional practice standpoint. Please don’t misunderstand. I have a great respect for people who work in the field of disability services, support and advocacy. In fact, I spent seven years running a small agency myself. But if you stop to think about it, it would be very strange if any other organization to advance the civil rights of a particular demographic group had very few people OF that demographic group actually working in it.

CILs are exceptional organizations because they are managed and staffed almost entirely by people, who understand disability from the inside and who know a lot about it, not because they got a degree or because they have years of experience in the field—although they may have both—but because they are themselves people living with a physical, developmental, intellectual or behavioral disability. They are the logical culmination of the slogan for full civil rights for people with disabilities: “Nothing About Us, Without Us”. This slogan, by the way, was posted prominently in the meeting room of the CIL, where I came to share. The National Council on Independent Living describes CILs thus:

Centers for Independent Living are community-based, cross-disability, non-profit organizations that are designed and operated by people with disabilities. CILs are unique in that they operate according to a strict philosophy of consumer control, wherein people with all types of disabilities directly govern and staff the organization.

Many people with disabilities and their families and friends along with an increasing number of professionals through the disability services field now ascribe to a new-ish paradigm of ability and disability. This paradigm locates “disability” not within a person or persons who have a non-typical physical, intellectual or behavioral condition, but rather within the community or society that maintains a self-perpetuating definition of what is enabling and what is disabling. If a person uses a wheelchair or walker to get around, then what is disabling is not so much the condition that prevents him or her from walking, but rather the structure and layout of buildings, sidewalks and streets that lack ramps, curb cuts, wide enough hallways and doorways or elevators. Similarly, if a person has limited use of his or her hands or has blindness, these are not disabling conditions for work if the computer they use is equipped with speech recognition or screen reading software, and the materials they need to work are available in an appropriate format. A person’s limitation in speaking orally is also not a disabling condition if he or she has the assistive technology to type what needs to be communicated. This is not to say that every barrier can be solved easily by technology, adequate space or easy pathways, but efforts should move in these directions rather than towards excepting people with disabilities from the aspects of life, where barriers make it difficult for them to participate fully.

CILs are not direct-service providers. For example, they do not mange housing units or provide medical or behavioral therapy, job coaching or personal assistance. Instead, they provide the education, training and support that will allow a person with a disability of any kind to obtain and manage the services and supports they need from within the general community. Each CIL is a bit different, but most CILs offer these types of programs:

  • Information and referral. CILs have a wealth of knowledge about any particular topic that is particularly relevant to people with disabilities, such as the availability and location of accessible, affordable housing as well as how to find, hire, train and manage personal assistants.

  • Advocacy. CILs actively and visibly promote full civil rights for people with disabilities whether by initiating, analyzing and responding to legislation and policies, or by engaging in community organization and development.

  • Independent Living Skills Development. CILs offer a variety of training and workshops to teach practical skills such as budgeting, commuting, travelling and job search. My workshop, which explored how to make the most of one’s Social Security, Medicaid and Medicare benefits while also returning to work, was part of this set of services.

  • Peer Counseling. CIL staff can help people with all kinds of disabilities and across the age spectrum problem-solve from a real-world perspective.

Many may offer additional programs and services like interpretation for those who are hearing-impaired or advice on applying for, keeping and using government benefits. If you are a person with a disability or the friend or family member of one, your local CIL may be one of your most effective resources. You can learn more about CILs and find the CILs that support your geographic area here. Access Living serves the city, and there are two sites for Progress Center for Independent Living each serving a different part of Suburban Cook County. For the rest of my home state of Illinois, you can get additional local information here.

It’s not unusual of a comic gag line to focus on miscommunication between two characters with very different perspectives. It’s why Garfield an Odie from Garfield get into scrapes and why their owner Jon had trouble getting a girlfriend. Misperception represents almost 100% of what’s funny in The Far Side and misperception is frequently a punch line in present in FoxTrot and Dilbert, just to mention a few of my favorite comedic escapes. But addressing real life situations in a productive way requires instead approaching them primarily from the perspective of the people most involved. That way, there is always an honest effort to avoid misperceptions and a lot more gets done. CILs have made this aproach a priority.

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