Thoughts on Identity

I like the freedom I have found, which actually I've always had, to decide for myself how I want to be defined. I like choosing for myself with Whom and with what I will identify.

That's not to say that there is no Truth in who I am. The truth, the absolute truth, is I am created by God for relationship with God in the image and likeness of God.

I like the freedom to choose that Truth. I like the freedom to decide for myself to identify with Christ and allow Him to transform my identity.

I like that freedom verses being defined by others who and what I should be. Verses being defined by others by my abilities and disabilities. Verses being defined by my faults and gifts.

I read a post at Disabled Christianity this morning which talked about a woman who, when asked if she had a disability, replied, "I used to have Down syndrome." To her people with Down syndrome were treated differently and ostracized. However, at this point in her life she is a part of things. She's a part of her church. She sees herself as a "normal human adult", as she would say. Therefore, in her conclusion, she must not have Down syndrome anymore.

I suppose it would be good if she recognized that, yes, she does have Down syndrome and learn that there is no shame in that and that it doesn't make her 'different'. It would be just as good if the rest of us learned that, too- if the rest of us learned that men and women with Down syndrome are, indeed, "normal human adults".

But I think it's also very good that she is choosing her own identity and does not define herself by her disability. She has that right to decide for herself whether or not to identify with her Down syndrome. A "normal human adult' is a valid self-definition.

Synagogues Opening Minds and Doors

From the article, "Opening minds, and Congregation Doors, to the Disabled" by Audrey Dutton :

"We were really trying to find a vehicle that would be helpful in making positive changes in the community in the area of having congregations be more welcoming
and more inclusive,” said Lenore Layman, special needs and disability services
director at the partnership.

The partnership’s goal was to ‘‘create a culture of inclusiveness” for disabled people and their families — a culture that many synagogues are now adopting, according to Layman.

‘‘There’s been so much in the secular world” that regulates disabled access on a physical level, Layman said. Layman said the ‘‘culture” of inclusion — how to speak to someone who is disabled, include them and accommodate their needs — is
something all houses of worship should work to create.

Redemptive Suffering

I'll admit, I had to watch this video a couple of times to really understand it. I knew God used suffering for good, and all that, but I'd never thought of God as One Who would redeem suffering. Sin, sure, but suffering, too? But the idea is begining to make sense to me, and I feel amazed and humbled by the character of God. (Watch the video here or on YouTube with links to the rest of this talk.)

Interested In Online Friendships?

From their website:

e-Buddies fulfills the mission of Best Buddies by facilitating e-mail friendships between children and adults with intellectual disabilities and their peers who do not have intellectual disabilities. Individuals are matched in e-mail friendships based on age, gender, geography, and similar interests. e-Buddies never matches individuals
that reside in the same state. We ask members to e-mail each other at least once
a week.

e-Buddies provides individuals with intellectual disabilities an
opportunity to develop new friendships while acquiring much needed computer
skills. The benefits of that are immeasurable.

I joined, and it's pretty fun and very easy. My new friend is easy to talk to, and she's got quite a lot to say herself.

Drugs Offer No Benefit in Curbing Aggression, Study Finds

From the New York Times

Drugs Offer No Benefit in Curbing Aggression, Study Finds

By Benedict Carey

Published: January 4, 2008

The drugs most widely used to manage aggressive outbursts in intellectually disabled people are no more effective than placebos for most patients and may be less so, researchers report.

The finding, being published Friday, sharply challenges standard medical practice in mental health clinics and nursing homes in the United States and around the
world."

the article continues:

In the study, Dr. Peter J. Tyrer, a professor of psychiatry at Imperial College London, led a research team who assigned 86 people from ages 18 to 65 to one of three groups: one that received Risperdal; one that received another antipsychotic, the generic form of Haldol; and one that was given a placebo pill. Caregivers tracked the participants’ behavior. Many people with very low I.Q.’s are quick to anger and lash out at others, bang their heads or fists into the wall in frustration, or singe the air with obscenities when annoyed.

After a month, people in all three groups had settled down, losing their temper less often and causing less damage when they did. Yet unexpectedly, those in the placebo group improved the most, significantly more so than those on medication.

In an interview, Dr. Tyrer said there was no reason to believe that any other antipsychotic drug used for aggression, like Zyprexa from Eli Lilly or Seroquel from AstraZeneca, would be more effective. Being in the study, with all the extra attention it brought, was itself what apparently made the difference, he said. “These people tend to get so little company normally,” Dr. Tyrer said. “They’re neglected, they tend to be pushed into the background, and this extra attention has a much bigger
effect on them that it would on a person of more normal intelligence level.”

In my experience as a direct care giver and medication aide working with men and women with developmental disabilities, administering antipsychotic medication for those who exhibited aggressive behavior was very much the norm. Behavioral management techniques were attempted, though sometimes more half-heartedly than others, depending on the agencies I worked for. However, in almost all individuals displaying aggression, medication was the preferred method of managing behaviors.

I very much agree with part Dr. Tyler's statement about the people in this study getting so little company normally, that they are neglected and tend to be pushed into the background, and the extra attention from being in this study has a big effect on them. (Though I don't, as he does, believe it necessarily has anything to do with their low intelligence. This kind of attention would have a big effect on anyone.)

I'm not surprised that those who received the placebo had better outcomes than those who received the real medication. Antipsychotic drugs are powerful. They make one's head cloudy and can alter a person's reasoning skills which makes other behavior management techniques such as verbal prompts and positive reinforcement very difficult.

I'm not discounting drugs for those who truly need them, and indeed there are people with developmental disabilities who also have various mental illnesses, including psychosis, who do benefit from these kinds of drugs. But giving someone in one's care uneccesary medical treatment is called abuse.

People First Language

People First Language is just what it sounds like- putting the person first in describing a person with disabilities. Examples would include saying:

• person with a disability vs. disabled person


• woman with a developmental disability, man with a cognitive disability vs. mentally retarded man/woman


• 'He has Down Syndrome vs. 'He is Downs'


• 'She has a learning disability' vs. 'She's learning disabled'


• woman with a mental illness, man who has Schizophrenia' vs. 'She's mentally ill, He's schizophrenic'


• man who uses a wheelchair vs. wheelchair-bound, confined to a wheelchair

Important to note: People First Language is not law. Some people with disabilities do not use this language, or at least some aspects of it.

I actually use People First Language for myself, even more than for those I don't want to offend. I am predisposed, you see, to see the weakness first in the people around me, and, therefore, I limit people in my own prejudices regarding disability, race, height, you name it. Using People First Language has helped me differentiate between the people around me and their weaknesses (and strengths).