Category: Advocacy

Unconditional Love – Hit Me With Your Best Shot

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 rest of the story is authentic and raw as Dave and Karen share their vulnerability with the world. Listen to the entire story or read the transcript.

A Credo of Support

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

Purchase

Copies available through NormEmma.com

2011 AHEAD Conference and Changing Attitudes

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.

The presentations from the AHEAD conference can be found on the AHEAD Conference website.

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.

Game On

Dallin Paul
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