Don’t Call Me Special

Time to get Rid of “Special”?

“Special” implies differentness and apartness. “Special” is the label on segregated programs: “special education” and “Special Olympics.” “Special” is a euphemism, a word introduced by do– gooders to sugar-coat their control of our lives. After all, disabled citizens have “special needs” not “special rights.”

Beyond the AP Stylebook: a “Special” Note

The term “special” as in “special education” has been, is, and will be used to refer to efforts made to meet group and individual educational needs. However, the term “special” has come to be used as a euphemism for segregated programs or physical facilities that are almost always inferior to what is available to nondisabled individuals. “Special” has definite negative connotations within the disability rights movement.

The Case Against “Special Needs” (PDF)

If our society believed children with SPECIAL NEEDS were really SPECIAL, wouldn’t every parent dream of having a child with SPECIAL NEEDS? But the opposite is true: our society so devalues children with disabilities that identifying and aborting them is becoming common practice. And within the adoption world, children with SPECIAL NEEDS are the last to be adopted! So, again, just how SPECIAL are children with SPECIAL NEEDS? ISn’t the term actually a harmful euphemism that means just the opposite?

Needs Are Not Special

“Special needs” is part of this dichotomy which is used to split able and disabled. Indeed, to alienate disability. Disability is different and “special” and hard and weird. “Special” is an isolating word, in fact, because it sets people apart, and not necessarily in a good way, no matter what the original meaning of the word is

Ableist Word Profile: Special

So, here’s what I, personally, don’t like about special: I feel like it’s an isolating word. I feel that the concept of ‘special’ stands in the way of full integration into society, and it also perpetuates some very harmful myths. It sets people with disabilities aside and stresses that they are different and alien. That using a wheelchair, for example, is ‘special’ and different and weird.

How Many People are Deaf or Hard of Hearing?

As with any disability statistic, it depends who you ask. Here are some statistics from different groups with a brief summary at the end:

From the 2008 American Community Survey (ACS):

In the year 2008, an estimated 3.5 percent (plus or minus 0.03 percentage points) of non-institutionalized, male or female, all ages, all races, regardless of ethnicity, with all education levels in the United States reported a hearing disability.

In other words, 10,393,100 out of 299,852,800 non-institutionalized, male or female, all ages, all races, regardless of ethnicity, with all education levels in the United States reported a hearing disability.

This statistic was gathered in response to the question:

“Is this person deaf or does he/she have serious difficulty hearing?”

Source: The percentage of non-institutionalized, male or female, all ages, all races, regardless of ethnicity, with all education levels in the United States reported a hearing disability in 2008 (filter by Disability Type, “Hearing Disability).

2000–2006 National Health Interview Surveys

In response to the question:

“Which statement best describes your hearing without a hearing aid: good, a little trouble, a lot of trouble, deaf?”

83.7% of adults in the United States report “Good hearing”, 12.9% report “a little trouble hearing” and 3.3% of people report themselves as “Deaf or a lot of trouble hearing”.

Source: Health Disparities Among Adults With Hearing Loss: United States, 2000–2006

From the 2001 Survey of Income and Program Participation (SIPP)

About 8,000,000 people (3.7%) over 5 years of age are hard of hearing (that is, have some difficulty hearing normal conversation even with the use of a hearing aid).

Source: Can you tell me how many deaf people there are in the United States?

Summary

There you go, according to these three survey’s (or at least someone’s interpretation fo the survey data) somewhere in the neighborhood of 3 to 4 percent of people can be classified as “hard of hearing”. Each of the studies goes into more detail on what that means and how their data was gathered.

Something I am missing? Please leave a comment and let me know.

A Life Beyond Reason by Chris Gabbard

Chris Gabbard has written on how his experience as a father of child with a disability has affected his life. He introduces his son August with this description:

(August) lives with cerebral palsy, is a spastic quadriplegic, has cortical visual impairment (meaning he is legally blind), is completely nonverbal and cognitively disabled, has a microcephalic head, and must wear a diaper. Moreover, he is immobile—he can’t crawl or scoot around or hold himself up or even sit in a chair without being strapped in it.

Despite all of that, he explains his home situation which is the same as that of many families who have a family member with a disability:

At home, in the eyes of my wife, Ilene; our 7-year-old daughter, Clio; and me, he seems merely a little eccentric, possessor of a few odd quirks, as I said. We don’t think of him as being different; he is August, just another member of an already quirky family. Although he cannot play with his sister, she loves him.

From that introduction Chris goes on to explain their daily routine, how August caused him to revisit a childhood cruelty and the value of human life.

Read “A Life Beyond Reason”

Wretches and Jabberers

I am at the TASH conference this week and watched a pre-screening of the movie Wretches and Jabberers directed by Gerardine Wurzburg. The movie follows the worldwide travels of Larry Bissonnette and Tracy Thresher who both have autism. Growing up, both Larry and Tracy were limited in their speech and seriously misunderstood until as adults they learned to communicate through typing. Now they have travelled around the world and are doing incredible work as advocates to help others presume competence when they meet a person with a disability.

They are still working distribution, but it will probably be available on video sometime next summer. Here is my favorite clip:

Gary Barber on Killing Accessibility

This is well worth the read, here are just a couple of gems from Gary Barber’s article titled Kill Accessibility:

The old UX catch call is never truer here – we are not the users. The disparity between us and the people we are really working for, with accessibility, is sometimes just too great for us to even get a idea of what it is like, no matter how many videos of people using assistive technology we see.

And this zinger:

In reality there is no socially inspired public relations value in accessibility. A business can be seen to get more value out of sponsoring a guide dog than making their web site accessible.

The rest of the article is well worth the read. (via @scenariogirl)

Accessibility Fail, Fail, Fail, Fail and a Win

After seeing a number of accessibility fails posted on the Fail Blog:

It was great to see this one on their companion blog, Epic Win:

Open Education and Accessibility

The Open Education Conference is happening right now in Vancouver, but is also offering a number of ways to participate remotely, including live and archived streams of the event, or simply follow the tag opened09 just about anywhere (Twitter opened09, Flickr opened09, Delicious opened09, Blogsearch opened09, etc…)

The theme of this year’s conference is “Crossing the Chasm” and while I was disappointed that there weren’t more sessions addressing disability accessibility directly, there is a tremendous amount of value in almost every session I have watched to anyone interested in any kind of accessibility. Through the conference website I was able to find a couple of good resources on the accessibility of open educational resources for people with disabilities:

Open Source Accessibility Meeting (Check out the draft documents and presentations)
The Open Courseware Consortium Accessibility Working Group

One of the resources I learned about today is folksemantic, a service and set of tools to help identify open educational resources. A quick search for accessibility resources yielded the following shareable learning resources:

If you do join in the conversation, be sure to add yourself to the virtual attendee list!

Game On

Dallin Paul Looking Good

Congratulations to my youngest brother Dallin Paul who graduates from high school today. After high school, many students with disabilities are offered the opportunity to to participate in some type of post-high education program. Dallin Paul is graduating with an exceptionally large cohort of peers in special education and because of poor planning on the part of the school district his options for a post high education have been severely limited.

Long story short, the school district picked the wrong family to try and place a student in a converted gym for a classroom with little opportunity for community involvement or interaction with any nondisabled peers. If anyone from the school district is reading this, did you not realize that the Phillips family has multiple Special Education degrees, a Master’s degree in Rehabilitation Counseling, Part of a Doctoral degree in Rehabilitation Counseling and a Juris Doctorate? On top of that we have a combined lot of years as teachers and administrators in special education and direct care of person with disabilities. Game on.

Mad Pride

Newsweek tagline: “Why some mentally ill patients are rejecting their medication and making the case for ‘mad pride.’”

From The Growing Push for “Mad Pride”.

I am familiar with various movements that celebrate the positive aspects of difference such as Disability Pride, Deaf Pride and Crip Pride, but only recently came across the idea of Mad Pride, a movement that celebrates the positive aspects of mental health diagnoses. The movement has been around for awhile, but a recent Newsweek article was the first I learned of it, at least that I remember since I received my own mental health diagnoses.

There is much good that comes from accepting a mental health diagnoses and “coming out” to friends and family. Benefits include an increased understanding, a sense of community with others with like experiences and a greater openness to receiving help and managing lifestyle. Of course there can also be negative consequences, but I believe that the perception of those is generally greater than the reality.

On the other end of the spectrum from “mad pride” there are many who suffer from the debilitating effects of “mad shame”- an unwillingness to acknowledge a mental health diagnoses in ones self. In between those two extremes are the masses of people who have a mental health diagnoses that treat it as an illness managed through some combination of pharmaceuticals, self-medication or other treatment options.

When first diagnosed with a mental illness, I found myself somewhere in the middle– never ashamed, but neither was I anxious to shout it from the rooftop. Since that first diagnoses there have been long periods of darkness and frustration, I’m in a good place now with a completely different diagnoses (ADHD). I now freely share my diagnoses and am feeling successful in work and family life and my ADHD is a an important part of that success.

Additional Resources

‘Mad Pride’ Fights a Stigma (New York Times article)
MindFreedom (non-profit organization focused on human rights and alternatives for people labeled with psychiatric disabilities)
Mad Pride Wikipedia Entry

Accessibility Blog and Twitter Roundup from WebAIM

Jared Smith has posted an updated list of the list of accessibility blogs that he follows. In addition, he has added a list of Twitter users “that post frequent and insightful messages on web accessibility”.

Curb Cut