“During times of universal deceit, telling the truth becomes a revolutionary act.” George Orwell

Wednesday, June 23, 2010

Please keep Joni and Ken Tada in your prayers

This morning, the Joni and Friends website shared that Joni has been diagnosed with cancer. Please visit this website for the full letter drafted by Joni.

In the letter she states,
Please pray that the upcoming tests, surgery and subsequent treatment will be successful (thankfully, my quadriplegia has no bearing on either the surgery or the treatment; I'm like any other woman with breast cancer -- I simply want to focus my energies on getting better).

Of course, I believe that God can and does heal and I covet your prayers to that end. Most of all, please pray that God will pour out grace-upon-grace on Ken and me.

God has used and continues to use Joni in my life as an example of trusting in the sovereignity of God. I would wish to know and trust in God as Joni has learned to do throughout her life, but I would not wish to face the trials that she has faced to give her complete trust in God. When I waver in my faith or in my trust in God (I wish that were less often than it is) I will often think of her and am encouraged.

I must also tell you that through some opportunities I have had to meet and speak with her, she is real. Real about her life experience and the impact it has had on her. She is not some pie in the sky purveyor of platitudes. But someone who has lived the raw edge of life's challenges, coming away with a dogged desire to trust God, and look on her significant challenges as a way to encourage others. Her faith is such that I suspect she received the diagnosis of cancer anticipating how God would use it in her life to His glory.

Please keep Joni and Ken in your prayers as they move forward into the unknown of cancer. Cancer may not be known to them, but God is known and as real as quadriplegia, even more real. I leave you with one more quote from her letter.

For years I have hoped that my quadriplegia might encourage people struggling with cancer… now I have a chance to truly empathize and journey alongside, affirming that God's grace is always sufficient for whatever the disease or disability. (Joni 6/23/10)


Thursday, June 10, 2010

"Celebrating the past: Honoring the legacy of Eunice Kennedy Shriver and Senator Edward Kennedy"

That was the title of a presentation given to the entire membership this morning at the AAIDD conference. The majority of the presentation centered on Mrs. Shriver who was an amazing advocate for persons with intellectual disabilities in America. Her brothers President Kennedy and Sen. Edward Kennedy are the ones often credited with the actual programs and legislation that affected individuals with disabilities, but as one of the presenters indicated quoting Sen. Kennedy, "It was all Eunice!" I doubt that is entirely true, but it was clear nontheless from the presentation that she was the momentum behind much of the policy that impacts people with a wide variety of disabilities. For a more complete discussion of her contributions, I would refer you to an article by Dr. David Braddock entitled, "Honoring Eunice Kennedy Shriver's Legacy in Intellectual Disability" published in the journal, Intellectual and Developmental Disabilities, vol 48, number 1, February 2010.

There were several things about the presentation about Mrs. Shriver, however, that I was unaware of. I plan to become a student of her life in the future, but these two things were quite remarkable.

First is that she was a very devout Catholic. Steven Eidelman one of the presenters today who knew Mrs. Shriver personally, indicated that she would attend Mass twice a day, rain or shine, going to a little church near where their offices were. I love knowing that someone having such a profound impact on our country in the area of disability, was at least partially motivated by her faith in God. I wish that had been explored much more in the presentation, but it was mentioned and described as a critical part of who she was.

The second was that she was staunchly pro life. Another of the presenters, Deborah Spitalnik who was clearly not pro life, even apologized for giving Mrs. Shriver that label. Obviously, in the circles she runs in, to be called pro life is to be denegrated. How difficult for her (Spitalnik) to reconcile the life of and contributions of Mrs. Shriver with her pro life stance. She concluded her comments with a comparison of Sen. Kennedy and Mrs. Shriver as being loving family members on opposite sides of the issue and how wonderful that was. But there were the political jokes or innuendo about Bush or others who might disagree with her. Yet she herself could not even use the term pro life without an apology for characterizing Mrs. Shriver that way.

To me, it is not Mrs. Shriver who was inconsistent in her position towards life and intellectual disability, it is those like Spitalnik who are inconsistent. How can someone be in an organization like AAIDD which supposedly is all about what is best for persons with intellectual and developmental disability and advocate for the taking of their lives via abortion. This has been the case in the past as well with the AAIDD stage being given to those who would "prevent" intellectual disability via abortion. To me it is painfully inconsistent.

But praise and thank God for the life of Eunice Kennedy Shriver. She made her mark on the country and the world as well, bettering the lives of persons with disabilities in myriad ways. To quote the closing paragraph of the Braddock article mentioned above,
So, in every country across the globe, in every city, town and remote village - and she touched almost all of them during her life - let the word go forth to honor the legacy of Eunice Kennedy Shriver.


Wednesday, June 09, 2010

AAIDD Providence

I am currently at the annual meeting of the American Association on Intellectual and Developmental Disabilities. I am the incoming president of the Religion and Spirituality Division of the organization and have been enjoying interactions with old friends and have been making some new friends.

Today, I attended a session by Dr. Robert Schalock, a very important researcher in the field of disability. He was the moderator of a session about the Intellectual Disability: Definition, Classification, and Systems of Supports (Eleventh edition) The AAIDD is the organization which defines intellectual disability, which is no small task as it impacts people in terms of receiving services and legal responsibilities. I found it a very informative session, and those in attendance were a "who's who" of the field of intellectual disability for the past 20 years or so.

Two very positive things jumped out at me from the meeting actually 3. First, I plan to purchase the book noted above. I think it is critical to understand the direction the field is going in, and particularly relates to my interests in policy development for the church. Second and related, there seems to be a movement in the definitions towards more of a community focus, and a understanding of intellectual disability on the basis of services needed versus past notions of assessment and identification. This has always seemed to be an issue. If I label you intellectually disabled, that really tells me very little about who you are in really any way. However, should I describe the supports or services you need, I have a better handle on your needs professionally, and I at least have the potential of moving away from giving you a label that causes you to be devalued by society. It is a positive move and I raised my hand and told them so!

Thirdly, attached to the definition are what they call 5 assumptions. I will list them all here at a future date, when I have my copy of the book. But assumption #5 I did copy down. Here is what it states,
With appropriate personalized supports over a sustained period, the life functioning of the person with intellectual disability generally will improve.
I love that, but recognize that much of those kinds of efforts cease after one leaves school. I have clearly seen this principle in effect in a religious setting. Spiritual understanding and its effect on behavior, language, faith development has been at times staggering to me. I am ashamed to admit that I have had expectations that have often been beautifully exceeded by friends of mine with disabilities. I will often look at Kathi at our Light and Power class, at times holding back the tears at the spiritual insights of people, who as adults, continue to grow and develop as human beings.

I also raised the issue (when I raised my hand) that I feel that we are a bit stuck with group homes being as they are, in that we seem to be at a place, similar but not the same, that we were with institutions in the 70's. People are in the community in little institutional homes rather than in large institutions of the past. They are still socially isolated, they are still controlled and lacking in freedom, but it is individually on a smaller scale (although taken together, it is a scale of great magnitude). Dr. Schalock stated that we don't need another deinstitutionaliation movement, but I am not sure I agree. I think we do need another de-little-institutionalization movement where people gain freedom while in group homes. It is the next phase, I think, and churches are an integral part of facilitating the next phase. The Christian community can be both advocating for change, and also be the provider of real lives for group home residents. Let us have access to isolated people and let us bring real life to them. I honestly think that is what we have to offer.