My Testimony

As a human being, the list of aversive behavioral therapies that NY state has prohibited makes my skin crawl because they are so abusive. I am proud that my state has a committed to being more humane toward all of our citizens. Prohibiting these actions was the right thing to do and it is very upsetting that the Board of Regents is now developing plans to allow exceptions to these prohibitions.

As a parent of a child with a disability I am by turns infuriated and terrified that any of these horrifying acts could happen to my child in the name of therapy--with my state's permission.

As an RN and citizen of the state I am also wondering about the regulatory inconsistencies allowing these exceptions creates in our state:

• The NYS Health Department has very strict rules about treatment of people who live in the state's nursing homes. Any of the 'aversive behavioral therapies' listed in the new regulations would qualify as abuse in a nursing home and would lead to prosecution, fines, jail time, and loss of licensure for individuals and even institutions.
• The NYS Commission of Quality Care has similar, strict rules on behalf of adults with disabilities who live in the state's many homes and group homes.
• The NYS Mental Health Office enforces the same standards to protect people in the state who have mental illness.
• Adult Protective and Child Protective Services would prosecute caregivers or parents who engaged in any of these aversive/abusive activities in the home resulting in jail time and loss of custody.
• In fact all nurses, doctors, social workers, police, teachers, school personnel, and others who hold professional licenses in NYS are "mandated reporters" trained and required by law to recognize and report signs of child abuse. All of the "therapies" that appear in the board of regents prohibited list also appear in the list of activities licensed professionals are required to report.
• People in prison who have been convicted of crimes are also protected from these aversive strategies by regulations in NYS.
• Even animals in NYS are protected by law from the 'behavioral interventions' listed in this regulation.

Allowing exceptions to these necessary prohibitions only for children with disabilities puts these vulnerable people on the bottom of the value totem-pole in our state. It might even be said that these exceptions--making children with disabilities the only legal recipients in the state of these reprehensible behaviors--creates a hostile environment for children with disabilities in our state.

The fact that the effectiveness of these "therapies" is not supported by research supports the idea that exceptions to these prohibitions is nothing more than legitimizing cruelty.

NYS should set a standard for the treatment of its citizens that precludes cruelty and abuse for all, without exception.

Where there are problem behaviors we need to commit our resources, time and energy into finding or creating solutions that do not resort to tactics that would be construed as torture under any other circumstance.

Hurling Rant

In the recent NYS rulings about aversive/abusive behavioral interventions one of the activities that is prohibited, but may be allowed for some children is "hurling." Yes, you read that correctly, hurling.

Taken together the list of aversive behavioral therapy options sounds overwhelmingly evil. Considered singly the very idea of any of these methods as 'therapy' under any circumstance or for any child seems ludicrous.

When I first read about about hurling I thought they were referring to the ice sport where they slide the big tea kettle toward a big target on ice while people energetically sweep it's path. We were all subjected to hours of this during the Olympics. It wasn't my idea of entertainment, but didn't seem particularly abusive to me--it had a rather soothing (nearly anesthetic) effect...

But no, that sport is curling. Hurling refers to throwing a person--in this case, to teach them a lesson. So here are some of the questions I would have to ask about hurling:

• Who writes the plan that would include hurling? Who is the "hurling expert"? What is their certification?
• Is this done primarily by larger people to smaller people? Or is there some sort of hurling catapult on the market?
• What circumstances make hurling appropriate? What are the parameters of this plan? Where are people hurled? How far? How often?
• What does the research show about the effectiveness of hurling therapy? Who did this research? Who funded it?
• What liability is a therapist, school district, organization, or state that endorses this taking on? Is there special protective clothing for children we expect to hurl?
• How is it decided which children would benefit from a hurling plan? What benefits are expected? Are there other groups of children, beyond those with disabilities, that we feel would benefit from hurling strategies?

The questions are endless and make it clear to me that hurling can never be acceptable. Each of the prohibited activities on this list stand up to examination as badly as hurling does pointing me to the same conclusion about them--they are wrong. There can be no exceptions to the prohibition against aversive behavioral therapies. These activities should be prosecuted, never prescribed.

Whose Problem Behavior?

(The next three posts are a small series in response to the NYS Board of Regents proposed exceptions to their regulations on the use of aversive/abusive techniques in schools. I hope they inspire you to act on this issue!)

New York State has recently released regulations defining and prohibiting aversive behavioral interventions. This is a wonderful thing. The same paper, however, states that there could be exeptions to these regulations, that it would be ok to use the appalling list of abusive strategies on some children.

This is unacceptable.

My youngest daughter has Down syndrome. Generally speaking she is a good kid, she does have a temper and can have cranky times (she's not 'always happy' :) but usually she is a pleasant person that people like.

Part of her personality is that she likes familiarity and structure--she will not go willingly from what she sees as order to what she sees as disorder. In the language of disability she has trouble with transitions. This isn't usually a big problem because when she is resisting moving from one activity to another she can quickly be referred to her schedule or someone nearby can say something like "It's time for the assembly," or "Remember, we have PE on Mondays."

Hearing this, my daughter will tap herself on the head like she should have had a V8, say something like, "Oh yeah, I almost forgot!" and step into the next activity without any further difficulty. In new situations she likes it if someone tells her what to expect. (Most people do, that is why plays and even church services have programs!)

Most of the people in my daughter's life have no problem with this. In fact most of us rely on our own systems of calendars, lists and programs to manage transitions ourselves so sharing our info with my daughter seems pretty easy.

A few years ago, however, there was a new staff person in my daughter's classroom. This gal introduced herself to me by explaining that she knew that "People with Down syndrome are very stubborn," and asking me what to do when she runs out of the building. I laughed and told her if she ran out of the building to call me as nothing like that had ever happened before. I should have known this was a sign of trouble, but I thought once she got to know my daughter things would be fine. Silly me.

This person saw my daughter's transition-related resistances as a reason for punishment rather than explanation. So instead of saying that it was time for PE, and perhaps teaching her to ask what was next on the schedule, she would give her a 'consequence' for disobedience. The results of this little change led to a disastrous year.

Since my daughter's need to understand the structure of her day wasn't being met her little balking behaviors became bigger, more dramatic and less appropriate (the way you raise your voice when someone doesn't hear you.) Each of these escalations led to more disciplinary actions.

Much more discipline and less clarity of structure in her day led to expressions of anger and crankiness (remember she is not always happy!) which led to worse resistance behaviors which brought even more consequences... The cycle went on and on until one day I actually got that call about her running out of the school.

For the first time in her life we were having conversations about appropriateness of placement, sticker systems, time-out rooms, and behavioral plans. Fortunately, it was the end of the schoolyear and the next year we had different staff in her class. All of the "discipline issues" dissappeared in the new class making it obvious in a very scary and clear way that "her behavior problems" were not hers alone.

The talk in NYS about the possible use of aversive/abusive methods as therapy scares me to death. When I express this, people who know my daughter assure me that this doesn't apply to her at all. But the people who knew her a few years ago did not feel that way. Different people see her differently and this subjective assessment could allow someone to expose her to abuse in the name of therapy someday...

What would be happening today if the same staff had remained with her past that year???

I hope your blood is running as cold as mine is right now. There can be no exceptions.

Miles to Go

When my youngest daughter was about 4 months old she started Early Intervention and a teacher came to the house a couple times each week to work with her. One morning when I was on the phone with a (very wise) friend my oldest daughter, who was 4 years old at the time, asked me why she didn't have a special teacher.

I was flustered, but my friend didn't miss a beat--she coached me through the whole conversation. She told me to look her in the eye and firmly say, "Because you don't need one."

I followed her direction and my daughter looked at me, said "Oh." and went back to playing. It never came up again.

My friend then said to me, "No guilt and no waffling, Terri. They will have different struggles and different opportunities all their lives. Fair is not everyone getting the same thing, it's everyone getting what they need."

J-Mac got an award from ESPN last night, he's met celebrities and the president, and gotten lots of accolades since his stellar basketball game last February. I've had my concerns as a disability advocate that the publicity wouldn't create the impact I hope for, but I have really enjoyed watching his success.

Sadly, much of the response to the J-Mac hoopla in this area has been negative.

One teenage boy, sitting with my family at lunch this spring crabbed about the whole J-Mac situation for 10 minutes ending by saying the he was afraid that Rochester would be known as a "retard city."

I honestly do not know if he felt comfortable saying that to us because he is so familiar with my daughter that he doesn't see her as having a disability or because he values her so little that he thinks it doesn't matter if he says something horribly hurtful about her...

I am so impatient for a culture where everyone's struggles are supported, everyone's contributions are sought and valued, and everyone's successes are celebrated.

Are we there yet? Are we there yet? Are we there yet?

Guess not.

Mr. Wegman

Robert Wegman, a Rochester area business leader died last week at 87 years old. He was an amazing man--tenacious and innovative in business, respected (revered even) and empowering as an employer and generous in his philanthropy--he contributed great things to our community and will be sorely missed.

Mr. Wegman was my husband's employer for many years. It became evident to me, as a nurse, over the last few years that Mr. Wegman's health was changing. And it was very interesting to me both as a nurse and a disability advocate to observe the type and quality of care he received.

Typically elderly people who acquire health problems end up living lives focused on meeting their healthcare needs. Whether they live at home or in a nursing home, their daily care and medical needs often become the central theme of their lives.

When watching Mr. Wegman it was clear that living a life focused on health concerns was NOT his mission statement. Mr. Wegman remained actively involved in the community and in his business. He attended meetings and employee events, visited his grocery stores and he even held a business meeting with Rochester's mayor the week before he died.

This was possible because of the team of support people he had around him who transported him, made sure he had the things he needed and the cues he needed to be successful on hand at all times. They built on his strengths and accomodated his needs allowing his innate competence to continue to shine through.

Many people will immediately jump to the conclusion that the difference for Mr. Wegman was his wealth, but my experience is that even wealthy people who develop health concerns as they age end up living the medical model--perhaps in places where the furniture is fancier, but medical and care issues still rule the day.

The difference with Mr. Wegman was not his wealth, but his vision and the support of the people around him. In the vernacular of the Developmental Disability world he had a great "person-centered plan" and and awesome "circle of support." Yes, money made it easier to implement the plan, but vision and commitment created the plan in the first place.

In this area--as much as in the grocery business--Mr. Wegman was a trailblazer. Eldercare and living arrangements for people with developmental disabilities in the US are just beginning to rethink their commitment to medically-driven, problem-focused living. With the proper supports and accomodations in place Mr. Wegman was able to live his corporation's motto, "Everyday you get our best!" until the day he died.

Mr. Wegman's success affirms my belief in person-centered living for all--and inspires me to keep on keepin' on!

Unrealistic?

Automibles, airplanes, electric wheelchairs, antibiotics, microwave popcorn (and microwave ovens), open heart surgery, abolition, organ donation, remote controls, television, rockets to the moon, copiers (remember dittos?), desktop publishing, computers, integration, personal computers, hand-held computers, electric stoves, the internet, digital photography, genome mapping, indoor plumbing, contact lenses, Buffalo-style chicken wings, automatic dishwashers, DVDs, women's suffrage, cell phones, cordless phones, CPR, mechanical bulls, refrigeration, etc, etc...

The inventors of all of these things (and many, many more) were all considered unrealistic.

Even things we consider fundamental realities today, like democracy, were ridiculed when they were proposed (hence the electoral college!)

Prior to the 1970s it was written in textbooks that people with Down syndrome could not learn to read. When the laws changed and children with disabilities went to school this known "fact" was challenged. It is now estimated that a large percentage of people with Down syndrome can learn to read at above a 4th grade level--and many above an 8th grade level. This in spite of pretty poor compliance with the education laws throughout the country.

The term "unrealistic" sounds so practical, so irrefutable, so final when a naysayer uses it to squash an idea, but this is far from the truth. The fact is, NOTHING is realistic until it's real. Unrealistic is the place where every worthwile endeavor in the history of humankind began.

As Frances Hodgson Burnett said, "At first people refuse to believe that a strange new thing can be done, and then they begin to hope it can be done, then they see it can be done--then it is done and all the world wonders why it was not done centuries ago."

So smile when they call you unrealistic--you are in great company. You might even be on the path to discovering the best thing since sliced bread!

The End of the Rope

I was in 5th grade gym class when I first encountered "the rope." You know the one, it hangs from the (very high) ceiling to the floor of the gym and you're supposed to climb it. Theoretically you are supposed to cling to it using your arms to pull you up and your legs to keep you from losing ground while your arms reach ahead--I swear this was called shimmying or shinnying, but I looked both of those up and that is NOT what they mean!

Anyway, I couldn't do it. No matter how many demonstrations I got, no matter how many explanations they gave, no matter how much encouragement or teasing I got, I could not climb that rope.

Everyone else in my whole grade did it. Even the kids who weren't great at it the first week had figured it out by the third week. Not me.

Week four was set to be baseball. I admit I was scared. I had never failed so completely at anything before. I didn't know what was going to happen.

A couple of the other later-climbers and I talked about it. Were they going to keep us indoors to work on the rope when everyone else was outside playing ball? Were they going to call our parents? Were they going to make us stay after school? We just didn't know.

You know what happened? Nothing. Week four arrived and I went outside to play baseball with everyone else and no one said a word. I asked my teacher, "Do I get to go outside?" She said, "It's a new day, you might be good at baseball."

And after I didn't excell at baseball I got to move on to track. And after track, square dancing, and so on. Over the years I never got held back in one gym unit because I'd failed the last. And over the years I did find a few things I actually enjoyed and still do today.

Imagine the difference if I had a disability label. Too often in schools today if you can't tell time no one will even try to teach you about fractions. If you can't read you will not be in the classes about volcanoes or tidal waves, or Martin Luther King. You get to spend all of your time working on the things you cannot do while life goes on without you. Then you're old and too far behind and you get offered classes in "life-skills" instead of education.

You may well spend the rest of your life at the bottom of your rope with a few other non-climbers getting no other experiences, discovering no other strengths, building no other relationships.

It's time that we find ways to provide additional repetitions and accomodations without relegating a large portion of our population to a life at the end of their rope.

Rudy

This past week my attention has been consumed by two news stories.

The first is about the 31 year old pastor who was shot, allegedly by his wife, in Tenesee. She was searched for and found far away with the couple's children. She was arrested, and she has tearfully apologized to her family, friends and community.

This story has been everywhere--CNN, our local news, the radio, and the newspaper. It is the type of sad, shocking story that leaves everyone shaking their heads.

The second is about Rutherford "Rudy" Wallace, a 35 year old man who, while under medical care, was badly scalded, allegedly neglected for at least an hour, and then died 6 days later in St. Louis. Accidents happened, perhaps policies were not followed, and there are allegations of attempted cover-up or ineptitude. There has been no word of any search or arrest and no tearful apology to his friends, family or community.

This story was nowhere--not on CNN, not on our local news, not on the radio, nor the newspaper. In fact, if it weren't for the internet and Partners in Policymaking, I would not have heard about it at all. This is the type of sad, shocking story that no one ever hears about.

I want to know why the first story is tearing up the airwaves and the second isn't.

Two young men, both living in situations considered safe--one within his church, the other within a state institution for people with disabilities. Of course neither one was safe. Evil and errors are part of life, and as my dad reminds me frequently, "The death rate remains one per capita."

So why does one of these guys' death inspire national mourning and the other nothing more than a weak beaurocratic response from his state government and his mother's heartwrenching advocacy????

There will be arguments that one of the men was just more valuable than the other, but both have been described as loving by those that knew them. The difference is in who knew them, and what was expected of each.

One gentleman's institution, the church, was active in the life of the community and people expected to see him and be part of his life--they miss him. The other genteleman's institution was separate from the life of the community and people who never really knew him expected him to live and die there--which he did.

Safety is an illusion--both men died tragically. One man was valued and is missed--the people that cared about him make heartfelt testimonies. The other was unknown in his community (he reportedly was one of 300+ in his home) and officials issue statements (or don't!)

As the Partner that sent the story out said, "Give me community!"

I know that large institutions are de rigeur all around the country, in many places there are no other options. But separation and annonymity do not breed any more safety than anywhere else--it is clear that all of us will die, some of us tragically. Isolation and depersonalization do not solve this...

Let me and my children live within a community that knows us and, because they know us, can value us--and, if they have to, will cry when we die.

Tomato Sauce

Some folks say that life is like a box of chocolates, but I say life is like a batch of tomato sauce.

To begin with, while tomatoes are obviously the main ingredient in tomato sauce they are not the only ingredient. In fact, if tomatoes were the only ingredient in your sauce it would taste terrible. Believe me, a blop of hot tomato pulp on pasta does not bring generations of Italians home on Sundays for dinner, draw crowds to Italian restaurants or inspire the sweetest movie love scene ever (Lady and the Tramp, of course!)

In truth, even though the majority ingredient in sauce is tomatoes, it's the minority ingredients--parsley, basil, garlic, and maybe even some meat or peppers--that elevate hot tomato pulp to "sauce."

Furthermore, these minority ingredients need to be incorporated into the sauce from the beginning for the flavors to meld properly. Keeping them segregated in a bowl on the counter or adding them in later will not achieve the desired effect.

I learned to make sauce from my mother-in-law: First you put the olive oil in the pan and turn on the heat. Then comes the garlic.

Now the garlic needs some special treatment. To be successful garlic must be chopped, not minced (the food science guy on TV can tell you why!) then it gets put into the heated olive oil and sauteed. It must be cooked long enough to release its flavors, but not long enough for it to brown. If it gets brown throw it out, wash the pan and start again--even a smidgen of burned garlic will ruin the entire batch of sauce. Garlic is a little tricky, you might call it a special-needs spice. And the way you treat your garlic sets the tone for the quality of the entire dish.

Once the garlic is ready you add the rest of your ingredients, simmer for hours stirring occasionally. YUM!!!!! Serve over hot pasta.

Tomatoes give the dish its title, incorporating the "minority ingredients" from the start brings out the flavor, and the garlic--special needs and all--sets the tone. All of the ingredients are needed.

Isn't life just like that?

Grateful?

It's tough to be a disability advocate in Rochester today...

Jason McElwain, a young man from Greece who has autism had an awesome, high-scoring basketball game this weekend that has been seen all over the world was on the front page of the paper this morning. It is an wonderful, heartwarming story and yet...

The advocate in me (and my friends across the country) keeps asking questions like, "if he's a gifted athlete why was he only on the court for the last five minutes of the last game of his senior year?"

If I did ask--and I wouldn't dare--someone would say, "Can't you just be grateful?"

Well...yes. And I am.

Are other gifted athletes grateful to sit the bench and only play the last 5 minutes of their senior year?

Another question: Why haven't any of the news articles (except this morning's by Scott Pitoniak) and any of the TV coverage used person-first language?

I expect that this is because calling him "autistic" from the get-go sets up lower expectations in the reader/viewer which makes his stellar performance a bigger surprise and more exciting. This of course proves both that disability-first language does set up lower expectations and that Jason is indeed a basketball player who also has autism--he is not defined by his disability. In fact, no one is.

I know. I really am grateful.

And, does presenting J-Mac's accomplishment as a miracle let us off the hook? Are we settling for feeling good when we should be challenged? Miracles after all can't be replicated or built upon--just marvelled at... Is that enough?

Grateful.

Then we turn to the B section of the paper to learn that Liftline prices are going up related to zones and distances. Just this week I heard a radio ad saying the "regular" buses will now have one low fare, regardless of zone or distance.

It does cost more to travel from the suburbs to the city than within the city. RGRTA won't charge me more to make those trips, but they will charge more for my friends with disabilities.

Public transportation issues are always thorny, can't we just be grateful?

Are my neighbors grateful to get to leave their houses for work or play? Are they grateful when they are charged more than their neighbors for the same service?

Then back to the front page to find out that creating a center/museum in our city that pays tribute to civil rights activist Frederick Douglas is proving nearly impossible...

I don't have my thesaurus handy. Is grateful another word for frustrated?