In Act 2 of a This American Life podcast titled Unconditional Love parents Dave and Karen Royko talk about life with their son Ben who has autism. Listening to their story, it is obvious that they love Ben very much. It is also obvious that love is hard. The opening dialog between Dave and Karen:
Dave Royko
People say all kinds of things to me and my wife as parents of an autistic son, and they mean well.
Karen Royko
People would sometimes say to me, in public, or in therapy waiting rooms where there’s a lot of interaction with parents and they would say, you’re a saint. And I would just think, well, Jesus Christ. What am I supposed to do, beat the [BLEEP] out of him? What else would you do? Well, we have to take a lot of antidepressants. That helps.
Dave Royko
God bless medication. People would often say, I couldn’t do what you’re doing. I know when people would say that, I mean, it’s really a compliment. But it would sometimes though, feel like, yes, you would. Unless you’re really a [BLEEP] person and not cut out to be a parent, you would be doing the same thing. The only difference is, we have to do it. It always felt like a little whiff of this crap, like God never gives you more than you can handle.
Karen Royko
You just want to kick those people in the teeth don’t you?
Dave Royko
If that sounds harsh, here’s what it’s like for us….
The social model… is important in accessibility considerations because it recognises the importance of the context of the users and supports the view of accessibility as a relationship property; in the case of web accessibility the relationship being between the diversity of users and the web resource or application.
Be sure to follow the conversation using the #CSUN12 hashtag that you can follow on Twitter, Easy Chirp, your favorite Twitter client or one of the options listed below.
There are some other conversations you may also be interested in: #a11ysociety hashtag (the need for a professional accessibility society), and #wacol (web accessibility community collaboration), and #road2csun (promoting accessibility on the way to CSUN).
A photographic essay of someone acquiring a disability. For me, it served as a beautiful reminder of the thin line between the sometimes meaningless categorizations of people who are temporarily able bodied and people with disabilities. Enjoy.
(warning: brief nudity and graphic medical imagery)Jeff’s Website
You may feel like you know it when you see it, but do you know exactly what autism is? Lisa Daxer writes in her post titled How to Diagnose Autism, “autism really is a complicated subject”. You should take her word for it, Lisa has Asperger’s syndrome. In the post shed does an incredible of outlining some differences “between autistics and neurotypicals” in three categories:
learning and cognition
sensory processing
language/communication.
In the end she acknowledges that:
… Unfortunately, it’s just not possible. Autism is a complicated diagnosis to make and a complicated subject to study. The more traits you have, the more likely you’re autistic.
In general, a diagnosis of autism is made when someone determines that you have a lot of autistic traits, and that these traits mean you need help with something, and that a diagnosis would help. But defining autism–the essential cognitive style–is a project I think we’ll take decades to finish.
If you’re not already following Reports from a Resident Alien, take a moment to do so now, here are just a few of my favorite posts that have helped me to better understand what it means to have a disability:
Must watch video for anyone who knows anyone with a disability:
Read by People with Disabilities
Read by a Narrator
Full Text
Throughout history, people with physical and mental disabilities have been abandoned at birth, banished from society, used as court jesters, drowned and burned during The Inquisition, gassed in Nazi Germany, and still continue to be segregated, institutionalized, tortured in the name of behavior management, abused, raped, euthanized, and murdered.
Now, for the first time, people with disabilities are taking their rightful place as fully contributing citizens.
The danger is that we will respond with remediation and benevolence rather than equity and respect. And so, we offer you:
A Credo for Support
Do not see my disability as the problem.
Recognize that my disability is an attribute.
Do not see my disability as a deficit.
It is you who see me as deviant and helpless.
Do not try to fix me because I am not broken.
Support me. I can make my contribution to the community in my own way.
Do not see me as your client.
I am your fellow citizen.
See me as your neighbour.
Remember, none of us can be self-sufficient.
Do not try to modify my behavior.
Be still & listen. What you define as inappropriate may be my attempt tocommunicate with you in the only way I can.
Do not try to change me, you have no right.
Help me learn what I want to know.
Do not hide your uncertainty behind “professional” distance.
Be a person who listens and does not take my struggle away from me by trying to make it all better. Do not use theories and strategies on me.
Be with me.
And when we struggle with each other, let that give use to self-reflection.
Do not try to control me. I have a right to my power as a person.
What you call non-compliance or manipulation may actually be the only way I can exert some control over my life.
Do not teach me to be obedient, submissive and polite.
I need to feel entitled to say No if I am to protect myself.
Do not be charitable towards me.
The last thing the world needs is another Jerry Lewis.
Do not try to be my friend. I deserve more than that.
Get to know me, we may become friends.
Do not help me, even if it does make you feel good.
Ask me if I need your help.
Let me show you how you can assist me.
Do not admire me.
A desire to live a full life does not warrant adoration.
Respect me, for respect presumes equality.
Do not tell, correct, and lead.
Listen, support, and follow.
Do not work on me.
Work with me!
Credits
In Memory of Tracy Latimore
Written by Norman Kunc and Emma Van der Klift
Copyright 1995 Norman Kunc & Emma Van der Klift
I’m attending the Association of Higher Education and Disability (AHEAD) Conference in Seattle this week. Many of the sessions are typical fare for a disability conference, but I’ve found a strand of conversations pushing the conversation beyond where many disability advocates in attendance are comfortable. I love it.
The conference brings together professionals from disability service offices that provide support to students with disabilities in colleges and universities.
Here are some of the questions that were asked:
How do disability simulations used for disability awareness reinforce existing power structures and negative stereotypes?
How do disability service offices act as the gatekeeper rather than door opener?
Why is so much time spent evaluating and diagnosing disability that could be spent on creating more accessible environments for everyone?
How is the disability rights movement similar and different from movements of other oppressed groups?
There was a great discussion on the power of language where the power of words was affirmed, but Alberto Guzman put the language discussion into perspective when he said, “If the goal is to be politically correct, then we should just forget about it”.
There is tremendous value in examining our own ideas and perceptions. There was a palpable energy felt as as ideas and attitudes were challenged and changed. I will leave this conference with a renewed sense of purpose and direction in the work that I do.
It may be unfair to critique Apple and their iOS when they are doing so much in the area of accessibility, but as the current market leader and with their accessibility efforts they are the only experience that can even be compared with dedicated notetaker devices.
Advantages of Dedicated Devices
You don’t have to worry whether functionality is accessible or not, it’s going to be accessible.
More tuned into the needs of the blind community.
Accessibility is the bread and butter for those companies.
More training agency resources in the industry focused on the dedicated devices (than iOS devices).
Disadvantage of the Dedicated Devices
They are more expensive to purchase and users who are blind have less buying power than the sighted population.
More expensive to maintain- changing the battery in one (unnamed) device cost $400.
Lag time in development compared to mainstream technology.
Lack of versatility in what you can do (there’s no app for that).
Tools are not as powerful (i.e. advanced functions in Microsoft Word).
Advantage of Mainstream (iOS) Devices
More affordable.
They keep pace with technology better (i.e. using iOS devices to control appliances).
Wide availability, better distribution channels.
Less expensive to maintain.
Great compatibility with other mainstream devices- one device for the sighted and the blind.
Easier to find support from other people who have similar devices.
Disadvantages of Mainstream (iOS) Devices
The accessibility documentation and training can be difficult to find.
Accessibility is great on iOS devices and is woven into Apple’s culture, but it is still a secondary feature.
Accessibility provides access to text, not braille. Third-party soulutions are available, but support for Braille integration is still weak.
Less understanding of the needs of the blind community.
Individual applications may or may not be accessible.
Summary
Anne asked whether or not mainstream devices were able to adequately replace dedicated device. While some blind users already have already replaced their dedicated devices for a mainstream device, the needed functionality still isn’t there yet for many users.
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?”
“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”.
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).
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.
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: