It is a book full of step-by-step teaching information. It tells you how to break tasks down and how to avoid pitfalls. It is also full of tasks to teach. It has chapters on get ready skills, toilet training (I didn't have it back then), behavior management, independent living skills and more. It teaches you how to teach and how to evaluate. I admit that we don't always follow the process exactly (I really can't take that much process sometimes), but I never fail to find helpful information and ideas
While I find the book sort of frustrating sometimes because it is so process-y, this is of course why I need it. I find breaking things down hard to even think about sometimes and this book always gives me a place to start.
Beyond this it fully acknowledges the problem of creating kids who are totally cue-dependent and has you teaching the child to ask themselves "what comes next?" Teaching that thought process has been the biggest "step to independence" for us. It gets me out of the middle of the task once she has the steps. From taking showers to working on schoolwork, to playing games, to household chores, this book has been a HUGE help at our house.
When my daughter was a baby there was a program for toddlers at our town hall designed to give the kids a chance to play and moms a little break. I loved the idea of this program, used it fairly regularly for my older kids and looked forward to bringing my youngest there when she was of age.
When the day finally arrived I took her to register. I knew there several other moms who were bringing their kids to the program so Jenn would have friends there. I was psyched.
I walked into the office carrying my daughter, filled out the paperwork, turned to speak to the director and was turned away.
“Well, we don’t have kids like her here. We aren’t equipped. What if she cried?”
I said, “You’re running a program for 2-4 year olds—don’t they all cry?”
She was firm and she told me I wasn’t to think badly of them because they had inclusion programs, this just wasn’t one of them. I said I didn't inclusion was a program, that it’s the opposite of exclusion, but she was unmoved.
“Nope, she isn’t walking as well as the others, she can’t come. It wouldn’t be safe.”
I offered to provide a stroller for her, a stander, special toys. I insisted that it was ok with me if she fell down (since she also fell down at home.) But they were adamant. They did not take children “like her.”
Now, I had been through a little introductory advocacy training and had sat through a few IFSP meetings (IEPs for babies) and I had heard about disability discrimination. But no one had ever looked at MY darling baby and just said no before.
When I got in the car I burst into tears—I actually had to sit there for a bit because I couldn’t see to drive for a few minutes… but by the time I got home I was LIVID.
My town—to whom we pay taxes—was not going to look at my family and say, “We like this one, and that one, but that one is not ok…”
Oh no. They were not.
I walked in the door of my house, handed my daughter a graham cracker and called The Advocacy Center. They were aghast too…in fact they were arm wrestling over who could take the case—they all wanted it.
The lawyer I got to speak to said, in no uncertain terms, “No matter which minority you belong to, access is the civil right. There can be no opportunity, no equality without it.”
He sent me back to the program a few days later for some conversation, armed with knowledge and terminology. I am proud to say I was calm, polite and coherent.
And, it did no good at all.
And then the lawyer called the town.
After that the town called ME to make sure Jenn was registered at the start of each season. (And she did just fine in their program.)
Some people questioned whether we should speak up, whether we should just go somewhere else, do something else…
I was not capable of that. On any level. At all.
I knew in my heart that the lawyer was right. Segregation and inaccessibility keep people from the tools, relationships and opportunities to belong, to grow, to achieve and to contribute.
Access may not be everything, but access comes first.
When I was in high school I have to admit I was not a great math student. I faced new concepts (and some old ones) with a combination of confusion and intimidation that blocked even the faintest possibility of success. Finally, I stayed after school for extra help (though I held out no hope) and the teacher I worked with turned out to be great. She taught me a principle that made it possible for me to learn math, and that eventually became a foundation for logical thinking.
She told me, “If a principle works, it works for any number.”
Then she would have me do the complex equation with the number 2 or 5 until I understood it. In this way I learned things I had managed to miss completely for years… and I eventually passed the class. (Frankly, my dad probably also told me this 10,000 times, but he was my dad. I didn’t hear it when he said it! Sorry Dad!)
Extrapolator that I am, today I apply this principle way beyond math. When faced with a complex question of ethics I simplify it for myself by applying it to other groups or situations to see if I understand it better. It is not a perfect razor, but sometimes it helps.
So, let’s talk about the inauguration.
Carol Florman,of the Joint Congressional Committee on Inaugural Ceremonies announced to the press early in January that the inauguration would not be accessible, transportation would be shut down and travel would be long and obstructed so those with disabilities, small children and the elderly shouldn’t come…
What other minority should we substitute into this equation? Let’s think about African American’s…
Would it be acceptable to tell African-American citizens that the inauguration would not be safe or appropriate for them so they would be better off staying home? Cilla at Big Noise points out that the Disability Rights movement has many lessons to learn from the Civil Rights movement of the 1960s—what have we learned about exclusion and segregation? Could we tell African-Americans that they would be better off watching the inauguration in a place better-suited for “their kind”?
As much as I love our new President’s disability platform, I find the ableism and inaccessibility that were evident at the inauguration terribly upsetting. It feels as if, in our administration, the right hand doesn’t know what the left is doing…
(And can you tell me, after 20 years of the ADA, why our nation’s capitol is NOT suited for people with disabilities??
And why, when becoming accessible is required do disgruntled folks blame “those people with disabilities” rather than the business-owners and policymakers of the last 20 years who should have taken care of the problem years ago?
Sorry, I digress!)
When I discussed the inaccessibility of the inauguration with folks they told me I was unreasonable… whining even.
I was told there had only been 2 months to plan (don’t inaugurations happen every 4 years??) and that “those people” should content themselves with the TV since many people weren’t going (people who made that choice for themselves, may I point out?)
Then, at the inauguration itself former Vice-President Dick Cheney was using a wheelchair and commentator, Chris Matthews remarked that his wheelchair use was a metaphor for his lowly status in the eyes of Americans….
A wheelchair is a tool used for mobility. It makes no implications whatsoever about the status or capacity of its user. None.
And let’s try our substitution exercise:
Which minority could we put down in that way without consequences? What if something about Cheney reminded the announcer of the GLBTQ community and the announcer used THAT as a metaphor for something negative?? An announcer making that sort of remark would have to apologize—he might even lose his job.
And the fact that these glaring gaffes are either invisible or seem perfectly reasonable to most people in 2009 is utterly appalling. This is the living breathing definition of ableism among us.
So, the inauguration is in the past. What now?
Write to Obama’s administration and ask them to gather their inauguration committee and some folks versed in Universal Design and use this fresh inauguration experience to design accessible events NOW. So we never have to have this conversation again.
We can do better than this, I'm just sayin'.
Gary Pressley has some thoughts on this subject as well. See here, here and here.
Well, I have missed blogging this week. I have been taking part in a training and it threw me off. It was an excellent program and I learned tons, but it totally wore me out! I would get home, eat, sit down to write and fall asleep. Twice this week one of my kids lifted my laptop off of my sleeping self and replaced it with a blanket... (and of course I panicked when I awoke and thought I'd dropped the computer.)
And so much has happened!
Did you see the inauguration? What an amazing event.
Now, I know some activists are thinking that they can finally take a nap--we have arrived. A lot of the moms I know are sighing in relief, dying to return to hearth and home and leave political involvement to the professionals...
This, of course, is a HUGE mistake. In fact, our potential for complacency makes me almost GLAD that the inauguration was inaccessible. That was a pretty glaring exclusion--they even wrote it in the papers, for the sake of Pete--whoever he is!
I don't see this week's events as a signal of our arrival. I see this time of recognition as an OPPORTUNITY. An opportunity that will be lost forever if we sleep through it.
What are we going to do with this new visibility??? How are we going to leverage this moment to improve the lives of our communities--including our citizens with disabilities? How are we going to extend this moment to encompass the year, this generation and the future?
I believe, as I have written before, that presence leads to credence, and credence leads to influence...
Active and creative advocacy applied NOW has unlimited potential to change the world. So, what are your awesome ideas????
"I have a dream that my four little children will one day live in a nation where they will not be judged by the color of their skin, but by the content of their character."
Well, we got it right.
And once again we have firm evidence that the "we could nevers" and the "that's impossibles" and the "that's unrealistics" are NOT real barriers. They are only barriers as long as we allow them to be. (Do read my post about being unrealistic--it's one of my favorites!)
We know it. We live in an age of amazing breakthroughs on every front. How can we look at anything and call it impossible?? We can't.
We can say we don't know how (yet).... we can say we don't want to... but we cannot say "that's impossible" in 2009 and retain any credibility.
I believe Barack Obama in yesterday's speech in front of the Lincoln Memorial extended Martin Luther King's Dream beyond skin color, mentioning disability by name (once again--and yes, I am counting!)
Access to -Education -Employment -Healthcare -Community events and activities (and inaugurations!) -Citizenship (ie: membership, belonging, contributing) -Economic opportunity -ETC.....
Challenging? Sure. Difficult? Sometimes. Stressful? At times.
Possible? Once we decide to do it.
Necessary? If our country is going to live up to the mission and vision our Founding Fathers laid before us, yes indeed.
When my son was 6 or 7 he was a science-fiend. He was particularly fascinated with the rain forests and with life under the ocean. One day there was an announcement of some amazing discoveries in both places... My son wept. He was so sure there would be nothing left for him to discover when he grew up.
Well, the good news, for him and for us, is that there is PLENTY for us to do. Our gifts are needed. There is plenty of room for growth, for expansion, for us to reach together to create new opportunities and to grow as communities and as a country.
And as my friend Kathy told me on the worst, rainiest, muddiest, coldest, dankest church camping trip ever, "The worse the weather and the harder the task, the greater the teambuilding."
So, in summary: There is much to do. Nothing is impossible. Your gifts are essential. We are going to be friends.
I had a call from one of my friends this week and she allowed me to share it with you:
Well, it happened again. Mr D was outside playing with a couple of kids and before you know it he was off at a dead run down the middle of the road. I end up chasing him down the street or intervening in some other totally inappropriate behavior at least 3 times every day...
Sounds like a lot of work....
Oh, it's a lot of work all right. But that's not what I hate about it. Running and intervening I can do. What kills me--and I talk with my husband about this all the time--is the response of the people in our neighborhood--or at the store or anywhere. The looks and the judgment--this is the hardest thing I have ever done.
People are rough?
Well, not outright rough, but I can feel that everyone has some opinion. Whether they're thankful they aren't me, or thinking I should just let him run, or thinking I should just keep him in the house. They don't understand because they don't have a relationship with him or me. His behavior doesn't help. They don't get to know him, he is just scary to them.
Even the kids. I know when they hear the "R"word it's Mr D's face they see. They don't know him. They don't see how much he has developed over time. No one knows what he gains from being out in the neighborhood. And homeschooling keeps him separate too.
What does he gain?
I have a choice with Mr D: building his own little world away from everyone or teach him to live in the world. But I can't teach him ABOUT the world--I have to teach him in it. And I can't just teach him compliance--he needs to make good choices not just be controlled. He is learning 'always' and 'never' and practicing choices and what is expected...
He is still a child, still developing. And we are alone working for his progress. Believing in it.
What they don't know, what no one knows is that after 500 or 5000 or 30,008 repetitions he will learn. He does learn. He will stop running in traffic, entering homes, being inappropriate. He will grow into better interactions. No one sees his potential. He reads at grade level, he does math in his head--no one knows that. They see his behavior and see only limitations without hope--that he will never change.
If I could send him to school without restraint and without seclusion he would go back tomorrow. But I can't and what would he learn from that? My husband and I can't sign off on that. Our income is affected--our life has a very different focus, but that's the way it is.
No one can see potential through his behavior. no one can envision a life of independence--adventure--worth.... They see where he is now. They think it is too difficult to build something better--with what we have. They want compliance before they will invest in him. They have a vision of compliance with maybe some life-skills thrown in.
They see his behavior as a barrier--I see it as motivation. I take it on because no one else can. Or will.
He is not "other" and our family is not "less" just different. And everyone's low expectations and expressions of non-faith weigh me down. Everyone judges.
What would help?
Optimism. Expressions of expectation--looking for success. Recognizing success. Questions--asking me what I think Mr D is learning. Acceptance.
I notice that when many people talk about the personhood and rights of people with disabilities they seem to almost exempt those with behavioral issues. I think people have a hard time thinking new ways about these issues. I think my friend and her family exemplify these beliefs. Though it is not easy and goes against the tide in so many ways, they do not let go of their belief in their son.
I was tempted to look for the song "All I Want is a Room Somewhere" from My Fair Lady this afternoon. It is COLD here and just going to get colder and colder and a room somewhere “far away from the cold night air” is just what I need—sadly, it has nothing to do with my post.
A woman I worked with made a statement I usually ignore, but she followed it with, “I wish I had some ideas to give my sister.” Apparently her sister is a new mom and the baby has just been given a disability diagnosis. That statement changed the often heard “I don’t know how you do it!” (which I find pointless—pedestals are just too small to live on,) into a request for actual information, so I gave it some thought… What actually does help me?
Turns out there are a bunch of things for me—this is not an exhaustive list and I am sure what works for me will not work for everyone, but maybe it’s food for thought… So here is my list of some favorite things:
Information: Up-to-date, accurate information is critically important for making good decisions. Start with your doctor, look for support groups, there is a lot of great information on line (but hook up with someone experienced to make it easier to tell the good from the bad information.) I like conferences—large and small—I am an interactive learner and listening to speakers and discussing what I have learned helps me.
When you look at books about disabilities make sure that they are recently published—we live in a scientific age where info gets updated all the time and you want the latest and greatest. (If your child has Down syndrome Road Map to Holland by Jennifer Graf Gronenberg is a good one.)
Gathering: My local Down syndrome parent group has provided years of information and companionship for the journey. I have heard some folks say that a disability diagnosis is a poor way to choose friends (I myself have never chosen or rejected a friend by whether or not they wear glasses!), but over my years of parenting I have hung out with the music boosters at my kids’ schools, Irish dance families, the church nursery volunteers, and more—it is helpful and it’s fun to know people who share your common experiences. A few have become forever friends, but whether or not they do, being part of a community that “gets” what we’re doing has been valuable.
A Sense of Humor: Laughter lightens so much. Giggling is good for me!
A Sense of Purpose: I have really benefited from believing that anything I learn, I learn to share. I also believe that changing systems is as important as changing individual situations.
Faith: I am a person of faith and that has given pretty much everything in my life context. I find my faith sustaining (and it gives me my sense of purpose.) Regular doses of inspiration feed faith, so I seek them.
Health and Self-Care: Not that I don’t lapse in this when things just get TOO hectic, but nutrition, exercise, sleep, vitamins, haircuts, regular laundry and showers, and an orderly home (check out Flylady.net) all nourish me when I remember to fit them in. They are the source of stamina—and this life is a marathon, not a sprint.
Optimism: I really don’t get credit for this, somehow optimism is my default setting. Well usually, anyway…. I usually believe that I can try SOMETHING and that I can have an impact with my efforts. It doesn’t always work out, of course, but believing something good could happen makes me more willing to try.
Believers: I worked for many years with a woman that drove me out of my mind. She was an OT who always pushed for MORE for all of my patients—she never settled. NEVER!
If people walked, she wanted them to run, if they climbed Mt. Everest she wanted us to get them to walk on water. Team meetings with her were so frustrating—she was UNREALISTIC in the extreme.
But, here’s the deal: While we never did get anyone to walk on water, we did so much more, got so much farther and our patients made so many more gains because she was on our team—she kept us striving always and everyone won because of it.
I am a disability believer and I surround myself with disability believers. I read them, listen to them and follow them everywhere. Because I know my daughter and everyone I advocate with will go so much further if I do.
Family and Friends: they support everything I have already written. Studies show that people with friends and supportive families live longer, healthier lives. They certainly have more fun. I pursue this actively—for myself and for my daughter.
Distance from Systems: Responsive systems are just not something I can count on. When it works it is awesome. When the doctor listens, the teachers care, the therapists individualize, etc, etc, etc. it is grand. And I can have an impact on this with good advocacy skills and persistence, but I don’t count on this for personal support—any system is only as good as today’s director, grants and budget, and that can change any time. Enjoy when things are good, try not to take it to heart when systems go bad.
Seek Joy, Adventure, Laughter, ETC…: The world loves the “disability is tragedy” script. If you buy into this attitude it will define your life. Disability just IS. I write my own script and frame my experiences in ways I can live with. The ‘woe is me’ mindset just does not work for me.
So, what are your thoughts? What would you share with new moms?
While the Obama campaign was the first to articulate a disability platform (Obama had one from April, the McCain campaign added theirs in October) when it comes to accessibility, the welcome mat for the disability community has not been out...
The Obama campaign stated to Bad Cripple way back in the spring that "they were doing the best they could on accessibility." Sadly, this did not mean they were ensuring that campaign sites were accessible--it meant that sites might or might not be accessible, and that was ok with the campaign.
With that attitude it is little wonder that my friend Roving Activist had this experience back on December 30. An Obama Transition Team meeting on Healthcare Reform that is NOT accessible??? How can this be? Now the building should certainly be compliant with the ADA (and apparently has changes underway to rectify that), but checking to see that venues are accessible should also be the responsibility of Obama's people...
And now Planet of the Blind shares that ABC in VA is reporting that people with disabilities are actively being discouraged from attending the innauguration.
What if this were happening to any other minority?? Of course, it has in the past, but I mean now, in 2009?
I understand that they feel that this is a safety issue, but this is a safety issue because they have a lack-of-planning issue.
And they feel it is fine that they haven't planned proactively to for the inclusion of people with disabilities. After all, they aren't turning people away because they don't LIKE them... Some of their best friends have disabilities, I'm sure....
Psssst,note to Obama and team: Failing to plan is planning to fail--and when you're not including, you're excluding. (And don't tell me it's too hard, we KNOW you can overcome obstacles!)
Cherylberyl has the latest episode of the Disability Blog Carnival up in 2 places: on her old blog at Disaboom and at her new blog. It was smaller this time, but there is good reading there (I know I forgot all about it until yesterday...) The topic is Things That are Therapeutic.
I wasn’t long out of nursing school when the dynamic on the floor I was working on went down a poisonous path. They were between managers and somehow all of the staff had turned against each other and EVERYONE blamed EVERYONE ELSE for the situation. No one could see any way to change their behavior unless someone else’s behavior changed first.
A senior manager was called in to help sort things out and this manager told the staff that they not only could change their behavior, but they were responsible to—whether or not anyone else EVER changed. This statement met with blank stares and hostility. No one could imagine how this could work.
To illustrate her point she showed us a video of a woman displaying absolutely HORRIBLE behavior. The woman was stomping around, cursing, threatening and carrying on, it was upsetting to watch. The manager stopped the film and asked us what should be done about this person.
Well our staff was incensed at the behavior they had seen. They said the woman should be spoken to, limits should be set, she should be asked to leave, consequences should be levied, victims should be defended. Our manager wrote all of this down.
Then she told us that the next video we were going to see would probably upset us as well. She said that the gal in the film had just found out that her son was gravely ill, she was having serious financial issues and had just had a fender-bender on her way in.
Then she turned on the video. Guess what? She showed us the exact SAME video.
When she stopped the film again she once again asked what should be done about this woman. As you might imagine, the answers were completely different: Find her someone to talk to… see if she has a ride home… have the social worker share some of her community resources with her…
Of course she pointed out that our answers had changed completely in tone and in content. And everyone said it was because they now understood the woman. Our manager pointed out that we had completely changed our response toward a person even though that person had not changed their behavior first—or at all.
It isn’t the events of our life that shape our experiences or reactions, it’s the story we tell ourselves that makes the difference.
In her book, The Journey of a Lifetime: Leadership Pathways to Culture Change in Long Term Care, author Nancy Fox tells the story of research done by Princeton University psychologists where they tested seminary students to see if they would stop and help someone in need that they passed as they crossed campus. They told the students that they were needed across campus to do a task, some of them they even primed by reading them the story of the Good Samaritan, some they told they were late, some they told they had plenty of time.
They tried many variations and the single determining factor of whether the students would stop or not stop to help someone was whether or not they were in a hurry.
It wasn’t the situation, it wasn’t the need of the person on the ground, it was the story they told themselves in the moment…
This is why, in the book Crucial Conversations by Kerry Patterson et al. part of the preparation for holding ‘crucial conversations’ with others is asking yourself, “Why might a reasonable person be acting the way this person is?” To communicate effectively it is important that the story you are telling yourself sets you up to be receptive and respectful.
You can see the power of the stories people tell themselves play out in a million ways:
• In our town is a grocery chain that I frequent regularly and another I avoid like the plague. In the first everyone there is trying TO help me, it the other everyone is trying NOT to help. One treats their customers as the reason for their business, the other treats customers as if they are a necessary, but annoying evil. • Last week in NY a man with Cerebral Palsy was left on the bus overnight in the freezing cold allegedly by a driver and a matron who had finished their shift and had other places to be. It seems, instead of telling themselves they were helping a young man get home, they believed they were working a shift—a shift that ended before their work ran out, apparently. • In other bus-related incidents Dave Hingsburger had two very different bus experiences. In the first he left was outside in the winter weather by a driver who felt he had completed his job by bringing him to the correct address. In the second, a different driver made an extra effort to make the trip accommodate what his riders really needed. • In my blogroll over to the right there are blogs by many adults with disabilities who assert their passion for living their lives—as they are—with every word they write. Then there is the heartwrenching story of Dan James. His disability was not what was extraordinary in the realm of disabilities, rather, it was the story that he and his family believed about disability that led him to kill himself with his family’s help. • Back when Burt Holbrook was a child the narrative about Down syndrome was that babies should be given away before they destroy their families, that they should be “with their own kind,” that they could never learn to read or write or work… Look what changing those narrative has wrought for Burt and for others.
Our personal narratives determine the quality of our personal interactions, affecting the narratives of a group is leadership, and affecting the narratives of a culture changes society.