Reluctant Book Review Because My Silence Will NOT Protect You!

I admit I am nervous about writing this post. I know that this is a topic that makes a lot of people uncomfortable. And I know the spam this post will draw is bound to upset me... But this is a topic that is just too important to avoid.

The Book: Teaching Children with Down Syndrome about Their Bodies, Boundaries and Sexuality: A Guide for Parents and Professionals by Terri Couwenhoven, MS.

Yes, I am going there!

Safe and appropriate knowledge and behaviors regarding our bodies and our sexuality are necessary for anyone to be successful and happy in this world. Yet a number of factors often work together to deny this essential information from being successfully taught to people with Down syndrome.

Many people believe that people with cognitive disabilities are eternal children therefore teaching appropriate boundaries, etc doesn't matter... others believe that information about sexuality and relationships is just too complex for someone with Down syndrome to learn. Then there are myths like the one that people with Down syndrome can't be taught safe boundaries because something in them makes them hug (ugh!!!)

That's right, it's a myth.

There are also circumstances related to disability that create what the author calls 'altered scripts.' For example, your non-disabled children learn about privacy because once they become independent, adults no longer go with them into the bathroom, for example. A child that needs assistance with hygiene tasks longer, or always, does not learn about privacy the same way or in the same timeframe as other children.

And, let's face it, it can be really uncomfortable to read about the particulars about things like intercourse in relation to our children, and terrifically difficult to think about teaching these and the more abstract sexuality concepts to someone who is a more concrete thinker or who needs a lot of support to learn.

But none of this makes avoiding sexuality education acceptable.

A lack of correct information--or any information at all--about how their bodies work or how to take care of themselves, how to seek attention and how or when not to, and how to say 'no' can have terrible consequences. People who do not learn to appropriate behaviors and boundaries can end up completely isolated, can be negatively labelled, abused or can even be arrested. This is tragic and largely preventable.

This book is both overwhelming and excellent. It is overwhelming because it becomes clear early on that ABSOLUTELY EVERYTHING you have ever done, taught or modelled (on purpose or not) has an effect on your child's understanding of these materials! It also makes you realize how important correct information about the body, sexuality and relationships is to having a happy, healthy life.

The book is excellent because each chapter breaks down an important topic into manageable chunks. Each chapter has a combination of background information, a number of concepts to think about and teach, teaching strategies, activity suggestions and stories from the author about people's experiences. There are chapters on the body itself that include teaching names for body parts and teaching hygiene, chapters on puberty, developing relationship skills, privacy, dating and more. And there are helpful hand-outs in the appendix that can be copied to support many of the chapters.

I like the way the book addresses concrete things like how to trouble-shoot issues with hygiene AND more abstract concepts like "how to tell if someone is not interested in you." The book talks about how to have a healthy relationship and how to avoid and handle exploitave situations. It doesn't minimize or avoid the challenge or the necessity of teaching any of this information. The author has a daughter with Down syndrome herself and years of experience teaching sexuality and her understanding really shows.

In one respect I think that every parent of a child with Down syndrome would benefit from this book. I think parents of younger children would benefit from having a big-picture view of where seemingly little things like lack of privacy and indiscriminate hugging can lead and some tips for addressing these things early.... In all honesty though, if this book had been available when my daughter was younger it would have sat unopened on my shelf. So much of the book is geared toward older children--and so many of the topics are things that NO parent considers very deeply for their small children that it would have remained on my 'manana mountain' for a long time. (I do think that parents of younger kids could use an introductory level book to start them on the right road though. And if the author writes one I want you all to remember that it was my idea!)

I think that by the time your child is 8-10 years old this book is extremely helpful and pertinent. That will seem early to some, but as Ms. Couwenhoven says, "Puberty happens in all people, whether we are ready or not!"  Better to be ready, I say!

By the same token, I don't think it is ever too late to start to use some of the information in this book. Life is a process and better understanding of self and relationships would enhance anyone's life at any time. Parents and professionals working with teens will find this book an ideal resource, and those working with adults will find lots of helpful information as well.

Read author Terri Couwenhoven's Top 10 Questions on Down Syndrome and Sexuality.

Book Review: Late, Lost and Unprepared by Cooper-Kahn and Dietzel

Late, Lost and Unprepared: A Parents' Guide to Helping Children with Executive Functioning by Joyce Cooper-Kahn, PhD and Laurie Dietzel, PhD is a breath of fresh air. It offers a positive and practical approach to the maddening issues of Executive Functioning Disorder.

The executive functions are our brain's coordinating and directing functions. They include such skills as planning, organizing, scheduling, initiating, emotional control and working memory, to name a few. These functions can be disordered in anyone and can be affected by upbringing, experience, maturity and disability.

When these functions work smoothly, life goes well; and when they don't, it just doesn't.

From what I have found, there are traditionally 2 approaches to executive functioning difficulties: The first is to write the child off as lazy. The second is to write long, dull, negative, theory-dense, strategy-thin, tomes about it.

Neither of these approaches has helped my family much.

This book breaks that mold. This book is short. It is divided into 2 sections. The first discusses what the Executive Functions are, how they affect our lives and how they are assessed. The second section explains the process of changing behaviors and then has a chapter about each of the 8 components of Executive Functioning.

Each chapter in this section includes explanations, short term strategies, longer-term approaches for reducing support/increasing independence, and advocacy tips for working with your child's school on the issue.

The book is designed so that you can go directly to the chapters you need. So if my son is having trouble getting started on activities, but no difficulty with impulse control you can read the one chapter and not the other.

Each chapter offers lots of strategies for change--the strategies are concrete and doable and the overall tone is positive.

For my son who has Non-Verbal Learning Disorder these issues loom very large and I have been sharing quite a lot of the book with him as I go. For my daughter who has Down syndrome many of the same concepts apply.

The book offers strategies to meet a variety of learning styles with somewhat of an emphasis on auditory prompts and reminders. For my son these are great as-is, for my daughter the auditory prompts in the book require simplifying (a modification I would expect to make with most things.)

I am finding this book useful for helping my son and daughter with their differing diagnoses, I have shared a few nuggets with my other daughter and have even claimed a few strategies for myself!

That's my idea of a helpful book!

Picture and to learn more about this book click here.

A Delicate Dance

The relationship between someone with a disability and the people who provide their support can demand some complex choreography.

Since my daughter Jenn started at her new school this year people notice a difference in her ability to converse. She participates more. People notice that she takes more turns and clarifies more when people don't understand what she said.

What changed? Mostly, I think it's that she no longer has a 1:1 aide.

Now, don't get me wrong, Jenn had wonderful, well-trained, supportive aides. They were intent on making her more independent. Their presence made TONS of experiences available to her in our public school that she would have missed without them.

Yet, while the existence of a designated support person creates lots of opportunities, it also creates a tricky relationship. This relationship must be functional if the aide is to provide effective, individualized support. However, this relationship also turns the two--supported and supporter--into a "partnership."

A partnership is a social arrangement with etiquette and expectations. It requires give and take. It's both a useful and complex situation. (And it doesn't just occur in disability, executives and their secretaries contend with these issues on some level, as do couples.)When you're working with someone who is in partnership you are not just dealing with the individual--with either individual--anymore. You are dealing with the team.

I have met people in support situations who try to negate the "partnership" dynamic. I have met a deaf woman and a blind man who instruct people who are interacting with them not to address their support staff. Ever. While the desire to keep lines from blurring and to be addressed as an individual is understandable, it is awkward for observers and almost abusive to the support person to be treated this way. Consequently, this isn't the way most partnerships function.

Others try to treat their support partners more as friends. This works great if both people are compatible and can negotiate the leading-following nature of support--if not it gets ugly.

And if the supporter is an adult and the supportee is a child the partnership can't be anything but directive. But an adult with a cognitive disability is NOT a child. Providing adequate support AND self-determination requires both intention and attention.

With Jenn her partner status presented as a subtle waiting, a slight holding back and non-ownership of her role in conversation and other situations.

There are trainings and articles on the subject (like this one) but I don't think the questions of support vs. enablement, and codependence vs. interdependence vs. supported independence ever completely go away.

Parent as Support Partner.

When the parent is the support partner the complications of both the partnering and the parenting relationship get piled on even thicker.

When I am the support person my partner should be as self-determined as possible and I am there to facilitate.

When I parent I create the stuctures and expectations for my children...

My daughter needs both of these things, and it's hard to do them both at the same time.

Sometimes it's so easy to over-support because I do know what she's saying, because I know how hard some things are for her, because I'm her mother and KNOW what's best, because I don't have an objective view of her maturity or capability, etc, etc, etc... Beyond this, keeping my support-partner hat on all the time can be stifling for both of us--knowing when or how to remove it is really difficult.

When am I a parent? When am I a partner? And what if I need something?

Recently I turned down an evening swimming program for my daughter because I would have needed to swim with her. The opportunity to swim is good for her, but swimming after supper would disrupt my sleep which I just can't afford. The program director found a volunteer to swim with her... and I still feel a little guilty.

And when do you turn off the "because I'm the mom" mojo? I have seen parents of adults with disabilities subtly and not-so-subtly direct their adult child's choices. A partner who is also mom has undue power. Should she exercise that power?

Yet, NOT being mommish, being professional and detached doesn't work either. People need their parents to be attached and parental. At least sometimes.

And how does this work with the rest of your family members?

So far this is what I try to do: I try to engineer opportunities for my daughter to run alone--in big and small ways whenever possible. When she does need a partner, I work hard to set up situations that are healthy and effective. And when I am the partner I try to keep a balance between parenting and partnering. When things get out of whack I try to change.

How do others manage the partnership dilemma?

Picture from here.

Don't Dis Ability

Back a few years ago, B.B. (Before Blogging!), I was chatting with an acquaintance who was passionate about AIDS/HIV issues. She told me about this thing called blogging and that she was thinking about starting one. After our conversation I went home and set myself up to blog too.

I ran into this woman recently and asked her how her blog was going. She told me she had never actually started one.

Turned out that she had gone home after our conversation and talked the whole thing over with her husband (a web designer.) He had told her that she really needed a website before she started a blog, and before she could have a website she would need to be competent with HTML, and she would need a marketing plan and several other skills and THEN she could write a blog.

Her hubby had told her that YES, she was a pretty good writer, but writing is "just the tip of the iceberg."

She did try her hand at learning some of the HTML stuff, but found it complicated and uninteresting so she had stopped.

So, yesterday I wrote my 200th post and she didn't--despite the fact that I also only had the "splinter skill" of paragraph construction starting out. (No, I did NOT mention this to her!)

The difference is that I VALUED my splinter skill and looked for ways to turn it into something, rather than DEVALUING it because it didn't come in a package with every other skill known to humankind.

And the fact is I have learned several new computer skills from blogging... way more than I would have without it.

How many valuable and exciting things are nipped in the bud by this sort of de-valuing?

Lots. For everyone, I'm afraid. More, if for those with a disability.

When my son was younger there was someone in every team meeting I ever attended who wanted to exempt themselves from dealing with him, or deny him opportunities--in spite of his considerable language-based skills--because of the things he could not manage.

I spent years taking the skills the school labelled as "splinter skills" (and therefore meaningless) and re-framing them as "bridging skills."

I was constantly pointing out that things like language skills, which didn't interest his math teachers, could be used to improve his math skills...

The same with my daughter. She has great decoding skills and comprehension lags, so she isn't actually reading, according to some folks.

Yet, I find that when I am listening to her read and her understanding derails, if I hear her mention something like a character's purse, for example, I can draw a purse for her (adding a visual to her de-coding) and she will orient immediately to what she is reading. Her 'meaningless' splinter skills are the bridge to comprehension.

My friend's son loves to 'show off' according to his team. If his language skills were stronger they would call it 'performing.' My friend, on the other hand, works to use his love of an audience combined with his strong visual skills to insert story elements into his routines... thus turning his 'showing-off' into communication or story-telling.

Another friend, whose son is not diagnosed with a disability "has such great ideas, but he's so immature," according to his school. First of all, he is 17--of course he's immature! But wouldn't implementing one of his ideas be a great way to increase skills and maturity?

Reject the rejection! Embrace yours and your kids' skills--make bridges of those splinters--and see where they will take you!

Picture from here.

Some Things I have Learned about Learning

Over the years working with our kids' teachers I have run into a few glitches in the common beliefs about learning that didn't work for my kids. I thought I would detail some things that didn't go the way I had expected so you could analyze your own programs and interactions and iron things out early.

Organizational Skills: One year my son's team agreed that my son did not have these skills and decided that he needed to learn them. They tried positive reinforcement, they tried negative reinforcement, they tried ignoring the deficit, they tried orgainzing for him and nothing worked. EVERYONE was miserable and frustrated.

After a ton of discussion it became clear that they were treating organization/disorganization as a behavior, rather than as a skill.

After this they started explaining, modeling and giving him practice, the way they would to teach other skills. THEN they started seeing some positive results...

Behavior: My daughter always rode the 'regular' bus with the rest of our neighborhood. In first grade she suddenly started throwing her shoes on the bus. Now, this is obviously a dangerous thing to do--clocking the busdriver, or anyone else, is not conducive to safe arrival... So, they put an aide on the bus for safety. The aide sat with my daughter and my daughter stopped throwing shoes...

One day I ran into her busdriver in the grocery store and I said that I was so glad that we had solved the shoe problem. He agreed that the shoes had stopped flying, but then he said something eye-opening. He said that we didn't really know if she had learned or was just stopped... He was right of course. There is a difference between being good and being controlled.

I called the school that afternoon and we had the aide moved out of my daughter's seat to allow my daughter to make choices, but to intervene if she made the wrong one... A much better plan, if you think about it.

It should also be noted that compliance by itself is not an appropriate behavior goal. One team I know of wanted to make "will not say NO" a goal for my friend's daughter. If she can't say no how would she deal with unsafe situations and people? That was NOT an appropriate goal.

For another disturbing behavior experience read this post.

Flashcards: Testing and teaching are two different things. You can practice retrieving information that someone knows by using flashcards, but you don't TEACH info by asking someone repeatedly if they know something. Enough said?

Reading Comprehension: I learned this mind-changing thought from David Koppenhaver: To teach comprehension let the reader know BEFORE they read what they are looking for. Endless quizzing is testing, not teaching.

You can do this with a beginning reader as you read. Pause and say "What is Junie-B going to buy?" Or "What is Charlotte going to write?" For Social Studies or Science let them see the questions at the end of the chaper before they read the chapter as well as after. Or teach them to ask themselves what they want to know in the upcoming reading...

Think about it, it makes sense. Do you have a better chance finding what you want by sending your kids to just go look around the house for a few minutes and then asking did they find your phone charger? Or does it work better if you ask everybody to look for the phone charger?

Discrete Trials: While this method is popular and effective for many kids, the applications needs careful consideration. For my daughter it seems to make disconnected information silos in her head. For what she learns to be useful to her she needs webs that connect new info with old in meaningful ways--this helps with retrieval. It also makes what she learns meaningful to HER, not just meaningful while being mediated by a partner in a certain proscribed way.

The Fry Word List: When Jenn was younger her team was looking for ways to teach her reading where they could document their results. They spent hours and hours working on this list of 300 or so words... The problem was that this list is made entirely of small words like if and and and the. Not a noun or a verb among them. It is totally boring. And after hours of tedium, when you can finally read the whole list there is not a single book you can then pick up and enjoy.

A lot of time and effort, excellent documentation, but no meaningful literacy gained. Another activity that only had meaning when someone else was there--if you found her word cards out of context--say on a bus seat--they would mean nothing to you or to her.

3x5 Cards: These are the bane of my son's existence. Teachers REALLY love them. My son can't write on them. He can't jot notes on little bitty cards and by the time he has he has memorized his note and doesn't need the card. Every year we have to discuss this. Every year. When sitting in meetings it is hard to think of alternatives. One can copy a page (using a copier)and highlight the needed info. One could do lots of things on the computer...

Readiness: It's not all it's cracked up to be! One of my son's teams wanted to remove him from the strong academic classes because he couldn't keep up with handwriting (pointing out that Stephen Hawking has "handwriting difficulties" yet still makes use of his education made everyone chuckle and re-think!) Readiness seems like an important concept, but even if my son can never handwrite well he will build his life on the info he has learned. We can teach skills, but we can't stop that info to teach the skills. Ever.

Readiness is also frequently used as a reason not to do things with my daughter--it's a reasonable goal, but should never be a barrier. Whether or not she knows her colors, she should be taught other things. (She does, but I'm just sayin'...)

I hope these examples help you analyze your own situation and avoid some pitfalls. Do you have other examples?

Messages in The Madness

For several years I have worked with a woman who is both an excellent nurse and really good company. She also has a tendency to mix metaphors and create malapropisms that stick with me for years after I hear them.

One of the first I remember was when she was pretty sure about her opinion of a situation, but not COMPLETELY sure. She told me "not to hold her to it with a fine tooth comb." Now I would never have thought to hold anyone to anything with a fine tooth comb... but I do now. So be careful around me and hair tools.

Another time she was suspicious that someone at work had ulterior motives (which I am sure they did.) She told me to be careful because "there's something wet in the water." Of course, everything in water is wet, but I did not mention this to her--wouldn't dare!

But my favorite by far is her frequent assertion that there's a "message to her madness."

She's distorted a phrase, but it isn't really a bad idea.

When dealing with all the chaos: the kids, the meetings, the policy issues, the opportunities, the barriers, the rest of your life, etc, etc, etc... it is a good idea to have a few guiding principles--some message in the madness.

A consistent (though not rigid) set of beliefs can be very helpful... though they can lead to surprising places.

I went to a conference when Jenn was a baby where the speaker taught us all to ask "Where does this lead?" about the big and little decisions we would face in our daughter's life.

So when we consider doing things for our daughter or showing her how to do them herself we try to ask...

When we choose activities...

When we teach and discipline...

When we make plans...

And when we choose programs...

When we advocate personally and systemically...

This year, for the first time, we have chosen a special education program at a special education school for my daughter rather than having her included in our local school for her program. This was an agonizing decision for me--completely shocking in fact, but in the end it was the question "Where does this lead?" that cleared the path.

As we looked at our local high school and looked at the other possibilities available in our community we came to the reluctant realization that she would actually be more sheltered and less independent at our high school than at the special education school.

Our vision for our daughter's eventual life based on her own interests and choices (and not on any system's offerings, rules or shortcomings) has not changed. Her sense of herself as independent is crucial to this vision so we made our choice accordingly.

We believe.

(And if that proves wrong we will change it!! Trust me on this.)

She started there this summer. She likes it and it seems to be going well...

The message stays the same, but the path? That twists and turns. It's madness!

Picture from here.

Port Lucie Debacle

Now that I am back the first piece of outdated disability news I want to comment on is what happened in the Florida classroom that that voted a boy with autism off their island.
I will begin with a story:

Once upon a time there were 2 best friends in a first grade classroom in upstate NY. They both knew how to read, loved books, loved words and loved sharing this with everyone they knew. Perhaps they were a tad obnoxious which was only accentuated by the fact that they were 7 (many 7 year olds lean a little toward the know-it-all side, look it up in your developmental psych book!)

In first grade these girls were inseparable, in second grade they were in classes across from each other. In one classroom the teacher was pretty awful. She called her student a show-off, made fun of me (I mean her) when she picked out chapter books to read and was otherwise generally unkind.

Her friend, on the other hand had a teacher who let her read out loud to the class, had her look things up in the dictionary and generally was nice and seemed to value her.

The first time I ever cried in school happened when our two classes were in the school library at the same time and my friend went over to the encyclopedia with the librarian to look something up and I looked at them. My teacher yelled at me (in the LIBRARY) and asked me ‘Did I think that I was going to get to look in the encyclopedia with the librarian??? NO I WAS NOT!!!!!’

After that a lot of people thought picking on me in school was a pretty good idea. Ugh! She went on to torture one of my brothers, but my parents figured her out that year and kept my other brother from having her (which amazed me—I didn’t know parents could DO that!)

The moral of the story is I was not picked on because of who I was—my friend was much like me. I was picked on because my teacher was mean. She had a host of approaches to choose from—she chose nasty. She could have chosen nice—my friend’s teacher did…

The boy in Florida was not excluded because of his diagnosis, or even because of his behavior. There are thousands of teachers in the country who do not vote children out of their classrooms—no matter what they do.

When you read follow-up stories you realize that the teacher and much of the world still does not know what went wrong. I think I can help.

Apparently there were behaviors in the classroom that were difficult and were disrupting learning. So the teacher called the class together to name the problem and strategize solutions.

So far, so good. This is often a good strategy with groups that have gone sideways.

Where it turned into Lord of the Flies was in the next phase:

Here the teacher could have pointed out that all of these feelings and actions and drama are interrupting learning and then laid out a plan for ‘what we will do in our class when these dramas occur’. Then she could have said that the class would meet again next week to make sure things were working better, but if they weren’t we will fix the plan until we get it right. This would make it clear that she was in charge of the dynamic and it would make kids secure that everyone belonged AND that she was going to handle the problems that were upsetting to them.

But no, from here the teacher blamed the whole problem on one of the students and had the kids turn against him and vote him out.

The teacher is just lucky that she did all this at the end of the school year, rather than at the beginning. According to studies in education the formation of the learning community is one of the strongest predictors of the academic success of the students in any class. Their learning community became an incredibly dangerous place to be.

Teaching the children that the way to be “in” is to make sure that someone else is “out” leads to a lot of insecure kids scrambling to avoid the same fate—some will duck out of sight, others will aggressively seek to keep the negative attention on some scapegoat to protect themselves. These kids’ future teachers will be contending with this dynamic from them for years to come.

I will not insult the thousands and thousands of teachers who handle problems like these and more in thoughtful and effective ways by saying “teachers are just not prepared to handle these things.” Universities have been teaching and research has been supporting inclusive education practices since PL 94-142 was passed in 1975.

Most teachers are NOT 35 years behind in their profession!

[And can you imagine a computer engineer facing some new operating system saying, “I really can’t do this, when I was in college we learned Cobal, or Basic, or MS-DOS???? Everyone’s profession has changed since they graduated!

But I digress! (that’s for you Barbara!)]

I am sad for this boy and for his classmates who learned something about the way the world sometimes works--they could have waited a few more years to learn this lesson—some innocence is lost. But I am really glad that in this day and age people have the ability to name these situations as abuse and protest when they see it.

Kudos to Alex’s mom and the millions like her who are standing up for their kids all over the world!

Image from here.

Change

Recently I was in a group of parents talking about the challenges facing their kids who receive special education services, and as usual, someone in the group lamented that teachers are just not prepared to work with kids like ours. The parents all nodded their heads and then someone said (as someone always does) that this is just not what teachers expected to do when they were in school.

I nearly bit my tongue in half not to jump in with an inflammatory response—but that’s what a blog is for, right?

People say this about teachers all the time and it drives me NUTS! If I were a teacher I would be incensed!

First of all, the law that sent children with disabilities to school was passed in 1975, not last week.

Secondly, we live in an age of change.

I’m a nurse. Since my graduation back in the dark ages there have been huge changes in my field. The politics of healthcare are different, the economics are different, what we know about the body is different, the medications are different and treatments are different. Even our day-to-day activities have changed: we do all of our charting on a computer now—I couldn’t even type when I got out of school.

My friends in that particular conversation were an engineer, a business owner, and a computer specialist—fields which have also changed drastically in recent years (remember Cobal?)

Beyond this, when a nurse comes to me and says that she or he does not know how to do something we look it up together, I talk them through it and I arrange for further training if needed. If that same nurse came to me with the same issue 6 months later it is likely that there would be disciplinary action—up to and including the possibility of termination. And this is for an LPN who has had less than a year of vocational training!

All professions change and all professionals are expected to keep up. Teachers actually have an edge—they specialize in learning! In most cases teachers have kept up with their professions as much as the rest of us have.

The teachers in my district are excellent. They have masters degrees, they have mentoring and staff-development. They are completely committed to educating kids—my three children who have vastly different learning needs are all learning well. However it is not always easy.

When we nod and accept that the problems with educating our kids is that teachers are unprepared we insult teachers. Worse than this, we stop looking for the actual barriers to education. Things like administrative commitment, availability of support personnel, availability of pertinent trainings, availability of appropriate technology, political pressures and the like.

If, instead of being resigned to pseudo-problems, we addressed some of these actual needs in our schools we could create success for everyone.

Listen to the Canary

A few years back our school district went through some administrative changes. Within weeks of the change the parents of children with disabilities were alarmed when they were notified that the district had changed the Education Plans of all of the children who receive summer services. These changes were made without holding a single IEP meeting— meetings that are required by federal law.

As the next few years unfolded many, many more problems came to light about the way our district was being administered. The Special Ed parents knew of the problems first. We often joked that our population was like the proverbial canary in the mine shaft.

Before the invention of sophisticated chemical testing equipment coal miners would bring a canary with them when they descended into deep mines. The canary would indicate the presence of poisonous fumes before the miners’ lives were in danger. As long as the canary sang the miners knew they would be all right.

In November I heard Michael Collins from the National Organization on Disability present as part of a panel at the Association of University Centers on Disability annual meeting. He was speaking about his organization’s priority of Emergency Preparedness. Collins stated, “People with disabilities are like the canary in the mineshaft—AND if they can keep us safe, or get us out, they can do it for anybody.”

This stands to reason. If our environments are accessible for people with disabilities they are accessible for all. While steps challenge many, a ramp works for everyone. How many of us have benefited from elevators and automatic doors? And who hasn’t followed the closed captioning when trying to watch the news in a crowded airport or catch a game in a noisy bar? If it works for the people with disabilities everyone succeeds.

It also seems to follow that it if we can meet the challenge of educating the kids with learning needs, we can educate anyone. And if we can address the healthcare needs of folks with significant disabilities we are able to provide care for anyone.

The same can be said for housing, transportation, civil rights, employment and more. If our systems can succeed with people with disabilities they can accommodate anyone. The Universal Design principles that architects use to create accessible spaces can be applied far beyond the accessibility of physical environments.

In my experience this even holds true for cultural issues. For example, if people with disabilities (including cognitive disabilities) are well integrated into a community, people with other differences are usually welcomed as well.

Conversely, when our systems have problems the ill effects are first noticeable to people with disabilities as well. Like the canary in the mineshaft the experiences of people with disabilities are often the first indicators of both society’s successes and its failures.

(Thanks to my friend Kathy who made me the miniature canary in the cage in answer to my picture dilemma!)