More about Faith and Disability: my view

I found it really hard to write about faith and disability—not out of fear or embarrassment, but because the words I could put together were just pitiful. But I have been challenged…. So here goes:

In my view God fills my world and my life like oxygen and faith is like breathing. Sometimes I breathe easily, sometimes I gasp and pant. And ‘when my cabin experiences sudden pressure changes and the masks drop down from the ceiling I have to remember to put mine on, then help others and most of all trust that it’s working even if the bag does not inflate completely.’

And on top of this I believe God knows my name, loves me (and everyone else) and has plans and intentions for me—which is all blended together somehow with free will. (See why I find it hard to write about this??)

The day Jenn was born we were shocked by her diagnosis and awed by the “coincidences” that surrounded us.
• Like my first hospital roommate checking out of the hospital AMA. My next roommate had a job working with adults with Down syndrome—a job which she LOVED!
• Like the way the Bible study I’d joined about a month prior allowed me to get to know 2 moms of kids with disabilities before I desperately needed them for their expertise.
• Like the friend who had received some inspirational writings about Down syndrome from someone she knew 2 days before my daughter arrived—for no reason that was apparent at the time.
• Like the doctor who said some of the most empowering words I’d ever heard in my life. I met him in the middle of the night when he was checking on my daughter—he and another doctor had switched call for that night.
• Like the magazine that had come with my diaper delivery which had an article about having babies with special needs—where I found the phone number for the National Down Syndrome Society (who gave me the number for my local group.)
• Like a whole host of other large and small events that kept catching our breath…

Do I believe that Jenn is here for a reason? Yes. Do I understand how disability fits into God’s plan? No, I confide in God, God does not generally confide in me!!! But I do believe disability is part of the plan.

In fact I believe that my daughter—like everyone else—is made ‘in the image and likeness’ of God. There are people who do not recognize this in her—or others. This indicates a deficit in them, not her. Period.

Have there been difficulties, challenges and struggles? Well yes, at times. And there has also been growth, new relationships and opportunity…

Why us? Why her? What did we do to deserve (or earn) this?

Absolutely nothing.

That’s what grace is: a gift you don’t deserve.

Click here to read about a book that’s a great resource for families, churches and agencies who support people with disabilities in living out their faith. You can also enter a drawing for the book signed by the author.

Image--a burning candle--from here.

Disability Blog Carnival #38 Is UP

The latest Disability Blog Carnival is posted at Ryn's Tales and the topic is Faith and Disability. Ciick the link to find links to posts from all over the internet on this subject. Invite your clergy and your small groups to read and discuss the various posts as well!

My post on the topic is below!

Blog Carnival #38: Book Giveaway

In my role as Virtual Trainee for the AUCD I attended their annual meeting last fall with people from universities all around the country who work to improve lives for people with disabilities through research, service and policy. After a full day of learning and a high-energy poster session I gathered with a group of starving people and went to dinner.

In the course of dinner conversation we ended up discussing how everyone became interested in working with people with disabilities. As a mom I found it fascinating that, while everyone’s stories were unique, they were all based on relationships they’d had with people with disabilities at some point in their lives.

One of our fellow diners, Dr. Erik Carter, had gotten to know people with disabilities while working as a camp counselor—he had intended to work with the non-disabled kids at the camp, but had been re-assigned much to his surprise. He said his experience at that camp changed his life—in fact one of the campers in his charge was the person that invited him to faith.

His experience so profoundly moved him that, in addition to his career work in education and research, he wrote a book to help congregations successfully integrate people with disabilities into their faith communities.

Including People with Disabilities in Faith Communities: A Guide for Service Providers, Families and Congregations extols the value of inclusion for faith communities, shares the current research about people with disabilities in congregations and gives tools and practical advice for applying principles of hospitality, belonging and continuous growth in your own community.

He builds a case for inclusion that is convincing and compelling.

“It is not enough for congregations to simply mirror the rest of society when it comes to including people with disabilities. Rather, they are called to be leaders in transforming the culture—to graciously, lovingly and actively influence their communities. When congregations push toward a higher standard than the rest of society; when they demonstrate leadership, rather than lagging behind; and when their efforts stand in stark contrast to those of others in their community, it sends a powerful message. When a welcome is compelled by deep love and a sacred call, rather than by legal decree, it speaks powerfully to a watching world and provides strong evidence of one’s faith commitment.” (p. 17)

Later he goes on to say:

“It is more than a “nice idea” to include people with disabilities in your congregation. People of faith are called to view people with disabilities as integral to the wellbeing of their community; every member should be regarded as indispensable. When an entire segment of the population remains absent from the body of believers, that community not only remains less than it could be, it remains less than it was intended to be. Wholeness will always remain elusive to a community when the gifts and contributions of a whole segment of people are missing. Indeed, it is the community that becomes “handicapped” when people with developmental disabilities and their families are not present.” (p. 18)

The book also draws a distinction between congregations that allow people with disabilities to be present and those in which these same folks belong, participate and do more than receive but also serve and contribute their gifts.

Beyond the why’s of inclusion, a good portion of this book is dedicated to the how’s as well.

There are questionnaires to evaluate physical and attitudinal barriers to , religious education and other programs, and the needs of individuals who wish to worship with you. There is a chapter on discerning and providing supports, a chapter on the role of support staff and one about expanding your initiatives to impact your larger community.

The whole book is geared to help congregations progress continuously in their hospitality.

In short, get 2 copies of this book—one for you and one for your faith community. I think any community would benefit from the support and challenge this book presents. Churches that are struggling (like this one in Minnesota)would be much stronger after studying this book together.

In honor of this blog carnival Dr. Erik Carter has donated a signed copy of his book for a drawing. If you would like to join the drawing, leave a comment by 5pm 5/29/08 and I will draw a name and we'll send it along. Good luck!

My other post on disability and faith is here.

(Image of book from here.)

Unexpectedly Effective Advocacy #2: The Question

Since learning about my daughter’s diagnosis of Down syndrome and my son’s diagnosis of Non-Verbal Learning Disorder in the early 1990’s I have embraced advocacy skills—the skills of ‘speaking up.’ I have learned about successful advocacy through workshops, books and mentors and I have used these skills to change my kids’ personal situations, to improve systems and to promote public policies that support the recognition of the full citizenship of people with disabilities. Along the way I have picked up a few tricks that aren’t usually mentioned as advocacy skills, yet they work for me. Perhaps you will find them useful as well.

The second unexpectedly effective advocacy technique is the question.

The question is a powerful tool for gathering information—especially when you ask the right question.

One of my friends told me years ago not to ask your child’s teacher “HOW” your child is doing in class. Ask “WHAT” your child is doing in class instead.

She had asked her daughter’s first grade teacher HOW her daughter was doing. The teacher told her that she was a lovely, creative girl, that she got along really well with the other kids and that she was a pleasure to have in class. Imagine my friend’s shock a couple weeks later when she received notice that her daughter was not passing.

She had asked the wrong question. When you know WHAT your child is doing you know HOW your child is doing, but that the reverse is not necessarily so.

This past fall another friend asked how her son was doing in math and was told that he was meeting expectations. Later she asked what he was doing in math and in the discussion learned that he left half-way through every class for a pull-out. She requested a schedule change—if he must be pulled-out she thought it should be during his study hall (where she found out that what he was doing was drawing racecars!) He has been doing much more in math ever since—and he joined an after school art club where they love his racecars!

Questions are also extremely useful for engaging people in discussion. They are also good for re-framing discussions that are difficult or going badly.

Do you remember Columbo? That’s his picture at the beginning of this post. He was a TV detective in the 1970’s. He was known for his dirty brown overcoat, his cigar and his schlunky car. I don’t think there was ever a fight or a car chase on that show—or even any real confrontations until the very end of each episode. He confounded criminal masterminds through the incessant asking of questions.

He was brilliant! Channel him!

There is something about the question mark that people can’t resist. If I state in a meeting, “ The regs state blah, bla-blah, blu, bla-bla-blah…” I will get icy stares, rolled eyes and very little conversation.

On the other hand if I ask, “So how can we tweak this to make it compliant with these regs?” People will answer. Not always happily, but I find if they haven’t shut me out we can usually get to a reasonable place.

I watched a lawyer use questions in an IEP meeting one time and it was amazing. The boy involved was academically gifted and had a significant behavioral disability. The district had removed his specially trained behavior support aide to cut costs. His team wanted her back, but could not say so for fear of losing their jobs.

So the lawyer started asking questions:

How often did Joey have outbursts when he had an aide?
How often did he require intervention from more than his aide?
How often does he have outbursts now?
How often does he require intervention from more than one person now?
Are these interveners trained?
What will it take to get them trained?
Is having the one trained aide and reducing the number of full-scale outbursts really more expensive than the current situation?

He got little pieces of information from everyone around the table, showed that the current situation was actually more expensive as well as less successful and got the district to agree to bring the aide back—all with questions.

Even when a meeting ends with a disagreement questions can be valuable.

Say the committee had agreed on a plan for your child that you know will never work. The committee thinks it’s done its job and you are heading home to figure out what’s next. End the meeting with a question.

Do not say, “I am concerned that this plan will not meet Junior’s needs for academics and appropriate social modeling.”

That is NOT a question (see, there’s no question mark.) That’s a statement. About you.

Instead ask, “How will this meet Junior’s need for both academics and social modeling?” or “How will this help Suzie-Q be more independent?

In the meeting either everyone will look at you and blink like fish, or someone will answer you—talking a bit to loud and too fast. Just shrug your shoulders up without responding further. Leave the question mark alive.

Every time the situation arises where the program does not meet both of Junior’s needs, or Suzie-Q is clearly more dependent your team members will hear your voice in their heads. You may hear from them to revise the program even before you hear back from your lawyer!

Could anything be better?

(Image from here.)

Unexpectedly Effective Advocacy #1: Laughter

Today I begin a new blog-series on advocacy skills. Since learning about my daughter’s diagnosis of Down syndrome and my son’s diagnosis of Non-Verbal Learning Disorder in the early 1990’s I have embraced advocacy skills—the skills of ‘speaking up.’ I have learned about successful advocacy through workshops, books and mentors and I have used these skills to change my kids’ personal situations, to improve systems and to promote public policies to support the recognition of the full citizenship of people with disabilities. Along the way I have picked up a few tricks that aren’t usually mentioned as advocacy skills, yet they work for me. Perhaps you will find them useful as well.

The first surprisingly effective advocacy skill is laughter.

There is a common recognition for the value of “making ‘em cry.” It is a technique common in congressional hearings, telethons, and sometimes in IEP meetings. While it is often effective, there are some weaknesses in the tactic that need to be considered—it is great for some situations, but not for all.

For one thing, in a congressional hearing a mom can tell an emotional story because someone else will make “the ask.” In my child’s meeting at school there is usually no one else in the meeting to pick up and do the next steps. If I do let myself get really weepy I have a tough time pulling myself back together to complete my mission.

For another thing, there is a very fine line between generating empathy (having others ‘feel with’ you) and generating pity (having others feel sorry for you.) Empathy connects people, pity separates people creating pitiers and an object of pity. Since the goal of most of my advocacy is to connect people and systems to people with cognitive disabilities (who are already seen as objects by many), pity is something I can’t risk.

And WORST of all, I can’t do it. Unless I am neck-deep in tragedy I just can’t plan to cry. Believably anyway. And when I am neck-deep in tragedy people tend to hear my emotion and not my point…

I could not use this strategy, but I could see the value of emotion as a bridge between folks so in my own mind I re-framed “make ‘em cry” to “make ‘em feel.” And one of my most effective strategies EVER is to share a laugh.

Now this is not derisive or mean laughter—nor inappropriate silliness, just small laughs that we can share that support me or my point…

For example, I went to a meeting once where most everyone wanted a certain educational (and consequently vocational) path for my daughter. I did not like their plan because my daughter had told us that she wanted to work in the school library someday and their path simply could never lead her there. In sharing our family’s vision I made lots of good points (trust me, I really did!) My list of my daughter’s skills and my idea’s attributes were concrete and clear, but no one’s heart really moved until I asked the following question:

“Can’t you just picture Jenn LOVING to tell small children to SHHHHH?”

Not outrageously hilarious, but everyone at the table started to chuckle, people started to nod and pretty soon they started to come up with creative ideas to form a new plan.

The other thing that happens when I share a laugh with folks is that I start to relate to them a bit differently as well—I see them and me as more equal.

Another time I spoke at a school about disability issues. I was there as part of an agreement the school had made with a parent group because of some very ugly district behaviors. They expected a verbal beating…I did not beat them, I attempted to build a bridge with them. I was not very successful at all at first and then suddenly things seemed to turn around… At the time I really did not know why.

When reading the evaluations after the event I got my answer. Someone wrote, “I was prepared to hate you…until you made me laugh." She went on to say that I did actually have a few good points...

I am not claiming that this will work all the time—in my experience NOTHING works all the time. But it’s painless, it’s free and the more tools we have in our backpack, the better!

MEME Time

(This video has nothing whatsoever to do with memes, I have just always wanted to include it! Happy Mothers Day!)

I have seen memes played out on other blogs, but never tried one myself. I got tagged by Barbara at TherExtras and it seems like a nice Mothers Day activity... so here goes:

The Rules…
1. The rules of the game get posted at the beginning.
2. Each player answers the questions about themselves. Please use the option for changing a question to one question only.
3. At the end of the post, the player then tags 4-5 people by posting their names, leaves them a comment on their blog that they’ve been tagged and asking them to read the player's blog.
4. Let the person who tagged you know when you’ve posted your answer.

Here are the questions:

1. What were you doing 10 years ago?
In May of 1998 I was consumed with my youngest child's transition from pre-school to kindergarten. A highly stressful time. I'm trying to remember if that was a snowy Mothers Day here, but (though I can find pictures of every other year) I don't seem to have any of 1998... This year it's cloudy and cool, but NOT snowy!

2. What are 5 things on your to-do list today?
Be showered with cards, presents, chores done by other hands than mine and food I did not cook. (Check! And yes, I am quite spoiled!)
Go to my in-laws for more of same! (Check!)
Read more of the BADD posts (Check! And you should go read some too, lots of interesting perspective there.)
Watch Disney movie with my own princess. (Check!)
Transport teenagers to/from work. (Got the 'to' part done....)
There's more that will get done, but they asked for 5.

3.What snacks do you enjoy?
I really like snacks. Favorites: Hershey Kisses, cookies, chips & salsa... I could go on and on!

4. What would you do if you became a billionaire?

Support a couple of my favorite organizations, fund worthy efforts at increasing accessibility... again, I could go on and on.

5. What are your bad habits?
Snacking, going on and on.... by no means an exhaustive list!

6. Where have you lived?

Upstate NY. Always.

7. What were your 5 most interesting jobs?

Cocktail waitress, sales-person in a fabric store, nursing assistant, nurse, Virtual Trainee for the AUCD.
Being a mom isn't a job per se, but on Mothers Day how could I not mention it--it's my favorite of all.

8. Who do you tag to do this meme next?

Can people self-tag? If you read this and have a blog, please play and leave me a comment to say you did... if this doesn't work I will have to figure something else out...

Disability Blog Carnival #37:Disability Identity

The latest Blog Carnival is up over at Cripchick's Weblog click here for some great reading!

A blog carnival is when a whole lot of bloggers write on a single topic and one provides an index and summary. Disability Identity is a rich topic and there is a lot of thoughtful writing. Great perspectives for people with disabilities, families and professionals and other allies!

For my post click here.

(I like having you click to descriptions that other people make of pictures, but can't this time... Hope this works: the image is a painting/portrait of a dark haired woman seated in a wheelchair with an artist's pallette in one hand and a handful of paintbrushes in the other. The words Disability Blog Carnival are across the front of the picture.)

Is this Reality or Reality TV??? Who SHOULD Doctors Let Die in a Pandemic

Well, it has happened just the way I predicted and over dinner my children will be regaled with a hearty chorus of “I told you so!”

For many years now I have been a mean mom and have exerted my supreme right of (remote) control and have severely curtailed the viewing of ‘reality TV’ in our home.

I watched the first episode of the first Survivor show long ago and never went back. It reminded me of Lord of the Flies. I told my kids that the habit of setting up criteria, measuring people and voting them “on or off the island” is both infectious and poisonous. It degrades us and our culture and steeping ourselves in it will damage us.

They rolled their eyes and said what they always say when I rant: “Yeah right, Mom!”

Well it has happened—not only are high school cliques, neighborhood bullies, and the Joneses (and those who keep up with them) embracing the Reality TV mentality, but now they have been joined by an ‘influential group of physicians.’

Yesterday the Associated Press released an article that said that a task force of respected physicians had created a “grimly specific” list of who should be treated in the event of a major health disaster and who should not. (Read the article here.)

Those who are on their list, people over 85, those with certain injuries, those with mental disabilities, and others, are ‘off the island’ or “out of luck” as the article phrases it.

As a beginning point, I think this makes sense. Assessment is a good first step and if there will not be enough healthcare availability in a disaster, we need to know it.

So, what’s next?

How about a cooperative project with businesses, the American Red Cross, the Public Health Service or others to find ways to train more people… increase supplies… create personal or neighborhood response scenarios?

How about gathering tons of clever ideas about making the most of supplies and creating on-line and hard copy instructions and a way to distribute them to the masses? You could include survivalists and engineers on the team...

How about something with Postal workers for example? In many parts of the country they are at every person’s home every day. Or hairdressers? Or grocery stores?

These are just two seconds worth of my ideas—I’m sure a group of experts who were concentrating on what we CAN do instead of on what we CAN’T do could come up with a compelling list and even a plan. (Stephen Hawkings could be on the committee, I bet he’d be very motivated!)

Could they save the whole world? Maybe not.

Could they improve on where we are now? Probably.

Since we are not in a pandemic at the moment are they working on this or something like it?

Nope.

The article says that the eminent task force who wrote the report feels that triage teams who are prepared to deny treatment to these specific groups is the answer. As long as everyone is on the same page and will deny services to the same people, they have done their job.

Reality TV values have become Reality.

(Image here.)

Disability Identity

When it comes to disability identity I want it all!

I want person-first language. I think there is a pretty smooth flow of thought between the hearing of a diagnosis/label and their stereotypes for most people. I think interrupting that smooth flow with a little humanity is good!

I want inclusive and equal and ever-expanding opportunities for all.

I want both pride about the disability movement and acceptance within it. No trying to cover up the fact of a disability and no ranking of which disabilities are acceptable or unacceptable, worthy or unworthy (and I want a society that also holds these values—and I’d like it NOW, if you don’t mind!)

I think disablist discrimination—all discrimination actually—is everyone’s problem and discrimination against any other group (with or without disabilities) is NOT a solution.

I think that diversity that cannot expand to include people with disabilities is not diverse enough.

I want respect including respectful language, rights, safety, opportunity, access and belonging—for all.

I want to belong to inclusive groups, groups relating to specific diagnoses, and coalitions uniting people with many disabilities.

I want the freedom to choose inclusive education AND Special Olympics.

I want people to be unique AND to belong.

No, I don’t think it’s too much to ask! I have only just begun to ask!

(Find the image here.)

Prenatal Diagnosis of Down Syndrome: Blogging Against Disablism

Goldfish is hosting the annual Blogging Against Disableism Day--well, actually it was yesterday, but latecomers can be included--so here you go--stop over there and read up on the issues from all kinds of perspectives!

Sometimes when I give a presentation I use what I call my “bunch of balloons” format. I give the audience several bits of information which, taken singly, seem disconnected, but when held together in a bunch lifts us all to a conclusion.

Permit me to use this format today:

The first group of balloons we will take hold of will be about Down syndrome:

• Down syndrome is a genetic condition caused by an extra copy of chromosome #21 in a person’s cells.
• With advances in surgery for heart and digestive disorders, and the recognition of the role of hypothyroidism in Down syndrome, people are healthier and functioning at a higher level.
• The life expectancy for people with Down syndrome used to be 9 years, it is now 55, with some people living much longer. (PS: I don’t find this as worrisome as some folks do. I think the timing for this advance is perfect. With the aging of the baby-boomers our whole country is about to become EXPERTS at working with an aging population with increasing levels of disability—the work we have done creating accessibility for people who already have disabilities is laying the groundwork for successful aging for our entire population those with Down syndrome included!)
• It used to be believed and taught that people with Down syndrome could not read. Today we know that literacy at some level is an expectation for people with Down syndrome with decoding as a relative strength. It is suggested that many people will be able to read at a 4th grade level and some will read at above an 8th grade level. (Many newspapers are written at a 4th-6th grade level.)
• Today people with Down syndrome are going to school, getting jobs, getting married, buying houses and contributing to their communities in ways never thought possible just 40 years ago.
• Siblings of people with Down syndrome when studied report overall positive experiences.
• Disabilities that exist from birth happen in about 1 of every 33 births and among those Down syndrome is termed a low-incidence disability.

I could go on, but you get the picture: there are many indicators that the health, well-being and quality of life for people with Down syndrome have improved greatly in the last few decades.

Do you have these balloons tied around your wrist?

The next few balloons will be about something called Healthy People 2010.

Healthy People 2010 is a group of health goals agreed upon by the leaders in medicine and in the government. It lists many, many indicators of good health. These indicators guide funding and research, and they are analyzed and measured regularly to assess the country’s progress in health care.

The recent data shows that among many other things the following indicators are not improving or are actually getting worse:
• The number of preterm babies is up.
• The number of low birthweight babies is up.
• The number of C-sections—particularly those termed ‘convenience’ is way up. (Except in an emergency, risks of surgery are considered greater than risks of birth.)
• Infant mortality is improving, but remains higher than many other nations
• Maternal mortality is up.
• The racial and socioeconomic disparity in these figures is appalling.

(The dataset for these can be found here.)

(PS again: Because Down syndrome is a low-incidence disability it does NOT contribute significantly to these numbers.)

Got these balloons tied on?

The indicators on the quality of life for people with Down syndrome are improving immensely and the indicators on maternal and infant health are not.

Now, let’s talk about current events:
• Twice in the past 12 months a respected group of physicians has asserted the position that ALL pregnant women should undergo first trimester testing to rule out Down syndrome. (PS yet again—this of course was very powerful marketing of Down syndrome as terrible—a position obviously not supported by current data.)
• Studies show that physicians disclosure of Down syndrome to pregnant women with a negative bias (and you don’t even need the studies to surmise this: the abortion rate after receiving a prenatal diagnosis of Down syndrome is 85-95% depending on who you read—if the information were unbiased wouldn’t the rate be MUCH closer to 50%??)
• These announcements about prenatal testing for Down syndrome made the evening news. I have not heard any such announcements about initiatives on decreasing the rate of C-sections…or improving maternal and infant health.
• Brian Skotko, MD, MPP, wrote a letter to the editor to the Journal of the American College of Obstetrics and Gynecology giving broader and a more positive perspective on Down syndrome. The journal declined to print it. (Read it here,)

Are you airborne? I am.

Frankly, I think some physicians and organizations have a lot of nerve. With all the real work they have to do in their field, I think taking on Down syndrome is a disgusting misuse of time and talent.

The conclusion that I am lifted to is that Disableism definitely exists and it exists in very influential places. It is unbelievable and it is nasty. And if Disableism is so pervasive in an area where there is as much success as there’s been with Down syndrome, no one is safe.

So, who’s next?