Building Inclusive Communities: the Absence of a Welcoming Ideology and the Proliferation of Systems Thinking
(Your Mission, If You Choose To Accept It)
Why the Mission Impossible theme? I wanted to make it clear that the fancy title ofthis presentation is clearly unsuited to a 20 minute keynote, whereas I think it couldmake for a wonderful thesis, and this of course would need to be done by someonemuch smarter than myself, and therefore I extend to all of YOU this challenge.Although my formal academic days are far behind me, through the experience ofbuilding a charitable organization, and perhaps most importantly, being included in aunique way in the lives of people with intellectual disabilities, their families, and thesystems intertwined in their lives, I’ve made some observations and come to somerealizations that I will now share and will hopefully have value to you.But before we get too serious, I’m going to call on one of pop culture’s leadingsociological experts to help set the stage with this 90 second video clip.
To me this clip has it all. We can take it at face value as an expression of the frustrationand even the intimidation of technology. I am sure many of you in this room who areeducational technology enthusiasts have encountered techno-hostility in your attemptsto introduce and promote the use of technology in schools. We can also look at the GPSas a system that intends to be helpful but has the power to compel negative outcomes.And then there is Michael Scott’s heartfelt sentiment that life is about humanconnections, and machines are about trying to murder you in a lake. I know in my field itoften feels like the system is trying to drive people into a lake.When I talk about the absence of a welcoming ideology, I’m talking about the socialexclusion of people with intellectual disabilities. This takes place in two major ways:first, within the taxpayer-funded system of supports that we in Ontario calldevelopmental services – the machinery for this exclusion operates under names likegroup home, day program, and sheltered workshop. Secondly, we have others systemsin the community, such as schools, sports and recreation, arts and culture, and more,that tend to exclude through the creation of things that are called “special” it could bespecial education, or special gymnastics. If there is some sort of activity that regularcitizens enjoy, then we can create one with the word “special” in front of it, and makesure that’s where people who meet certain criteria for “difference” belong.
It is the supreme art of the teacher to awaken joy in creative expression and knowledge ~ Einstein
I myself decided against a traditional career in education right in the middle of my teachertraining. I did finish my Bachelor of Education back in 1993, but well before graduating, Iknew I would probably never teach in a school. Schools are structured to make learningvery difficult - what with all the bells ringing and the boring textbooks, but that wasn’twhat really turned me off.The day I gave up on being a school teacher was the day I was chastised for “doing mathtoo loudly.” I had a 6 grade class, many of whom were recent immigrants from war-tornSomalia, and I was in a constant battle for their attention. They were struggling with theirnew existence, and of course there were adjusting to the very abstract routines of theclassroom. At one point I had succeeded in designing a group work geometry unit that tome was exceeding all of my expectations. The students were actually interested in math,and enjoying the work.This moment of pride did not last long. I was called to the office of the vice-principal, whohad been discretely observing from the school hallway. For a moment, I thought perhapssome praise was coming my way. Instead, I found myself taken to task because theclassroom was too loud. When I protested that there was no such thing as “doing math tooloudly” I was given an option: stop doing math loudly, or go home. I didn’t go home thatday, but after I finished my degree, I decided I needed to work in a more creative space.
If I was just now starting my teaching career, I’d probably be getting in trouble abouttechnology. I would be arguing that computers, tablets, and smart phones are learningtools, not distractions from reading, writing, and arithmetic. I have noted that many privateschools and tutoring services are marketing to parents by promising the absence oftechnology in their teaching. I cannot see how demonizing technology in this way can behelpful.I work with individuals, many of whom did not learn to read in 15 years of formaleducation, but became readers as adults, owing largely to computer technology, and oftento engagement with social media. I find it laughable that millions of dollars are being spenton the development of social media policies for teachers. Stories like this one above thatcame out yesterday are typical in their ignorance, in that they try to understand socialmedia in a static way, as though it is asynchronous and lacks fluidity.For example, as in the story pictured on the screen, a teacher might be permitted to createa Facebook group for a specific school task, but they aren’t permitted to communicate withstudents via Facebook outside of that particular group. This is exactly like saying that ateacher can communicate with students on a school outing to a museum, but if they seethe student at that same museum but not during a school outing, they must immediatelyleave the building without saying a word.
Isn’t it obvious that conversations between students and teachers are not maderight or wrong because they are on Facebook? There are boundaries in thestudent-teacher relationship that apply anywhere. If teachers need to bereminded that those expectations carry through into cyberspace, then fine,remind them. Talk about it at staff meetings. Discuss strategies. Learn.But for goodness sakes, we don’t need to be banning social media fromclassrooms. At LiveWorkPlay we are happy to interact with our members byemail, Facebook, Twitter…it is no different for us than the office, a coffee shop,or a fundraising event. The benefits to this are to increase our accessibility andresponsiveness, but more than that, social media reinforces social capital that isbuilt in other environments, and vice-versa. It is without question that I say theuse of Twitter, Facebook, YouTube and LinkedIn help LiveWorkPlay accomplishcore mission-related goals and objectives.
The idea of riding the short bus is used in American English in much the same way that æåëòûé äîì‘ (yellow house) is used in Russian as a reference to mentally retarded children.Regular long buses transport regular school children. Shorter buses are typicallyused for "Special Education" (i.e., the mentally retarded) public school students whoare typically educated in different facilities or are transported separately from otherstudents but spend time at the same school in separate classrooms.
From my particular vantage point at LiveWorkPlay, I mostly see schools as a place forteaching people with intellectual disabilities that they belong apart from other kids, andthey teach other kids that people with intellectual disabilities don’t belong with them.Then they all leave high school, and – if you believe as I believe – they should all beliving, working, and playing together in the community. Except that everything theyhave learned in the formative years of their existence has taught them the opposite –that they belong apart.This is not to say that people with intellectual disabilities are not increasingly included inthe physical space of schools, or maybe even in the physical spaces of classrooms withnon-disabled peers, but we have yet to come close to a welcoming ideology. At best, Ibelieve we have achieved something more like tolerance or accommodation – which isbelow acceptance, which is below welcoming. For a student with an intellectualdisability to truly belong in the life of a school, there needs to be intentional efforts towelcome and include all students.
Am I exaggerating the problem? I know I am focusing on the extreme here, but it is2012, and we are talking about a public school system, and this photo by a concernedcitizen set off a public debate that made me angry and sad. The school and schoolboard in question is standing by their use of martial arts blocker shields by teachersand teaching aides, not only in the classroom, but also on public outings, as picturedabove.I myself am a former student of TaeKwonDo, and I know what those blocker shields arefor. If someone is holding a shield like that in front of me, it’s for the purpose ofpunching and kicking that shield. Without call for a complex study I’m going to goahead and arrive at a conclusion – that the routine of carrying of blocker shields byteachers and teaching assistants in a congregated classroom of students with autism isteaching those students, the rest of the students in the school, and indeed thesurrounding community, that autism is synonymous with violence.I understand that the school board, staff, and union involved in this debate havearguments in favour of the shields. But very few school boards do this, which meansthere are other options, which means they should perhaps stop being defensive, andfind a different way to respect the needs of both students and staff.
LiveWorkPlay Helping the community welcome people with intellectual disabilities to live, work, and play as valued citizens.Core value: people with intellectual (developmental) disabilities arevaluable contributors to community diversity and the human family. Controversial?
Let’s take a break from complaining about schools for a minute.I need to talk a little bit about LiveWorkPlay, and I’m going to gloss over a story that is fullof complexity, some grief, some resilience, and a lot of joy and boil it down to a verysimple summary. My wife and I founded the organization in 1995 because we saw aproblem and we felt a calling to fix it. But by any objective analysis, we did not possess theskills, experience, connections, or resources for the undertaking. And yet, here we are, 17years later, supporting 100 people with intellectual disabilities, and more importantly,connecting with hundreds of businesses and citizens in the community who are embracingand co-constructing a welcoming community.Back in the late 1990s when we first achieved meaningful financial resources, we foundourselves drifting into offering a lot of the same types of programs as other agencies. Ourgood reputation owed mainly to trying very hard to do a wrong thing, but delivering itmore effectively than all the other agencies that were also doing a wrong thing. And rightthere we see what the proliferation of systems thinking can do. The power of doing whathas always been done cannot be underestimated.
About five years ago when we overcame some long odds and found that we hadaccumulated significant assets and stability, we took a deep breath and realizedthat aligning ourselves with the developmental services systems was not what weset out to do, and so for the past five years or so we have pursued what manyperceive to be a radical transition. We closed our small sheltered workshop, closedour quite large day program, committed to never establishing or promoting grouphome living, and turned our focus to real homes, real jobs, and real citizenship.The result, in brief, is that it works! Some individuals who had been deemedincapable of living in the community and in need of 24/7 group home supervisionare living in homes of their own in non-supervised environments. People who wereworking in sheltered workshops for $1 an hour are making ten times that, lovingwhat they do, and expanding their personal and professional networks.Our members are spending time with other citizens enjoying hobbies, arts, andother leisure in places and programs that don’t include the word “special.” Wedon’t discourage anyone from enjoying group activities with other people withdisabilities. But we also don’t present to people that this is their only option. Wehave had great success finding community members who enjoy mutually beneficialrelationships, learning together, and helping change our community.
Social Services A Transformative Journey Social Change (Medical Model) (Community Model)Decisions = Paid Staff and/or FamilyEducation = Day Program/Special EdRecreation = Segregated ProgramEmployment = Sheltered WorkshopHome = Institutional SettingRelationships = Paid Staff and/or Family TRANSFORMATIONDecisions = Self-DirectedEducation = Inclusive ClassroomsRecreation = Playing In CommunityEmployment = Authentic Work/VolunteerismHome = House or ApartmentRelationships = Family, Friends, Lover, Neighbours Unpaid Support, Paid Support
So what does this welcoming ideology look like in action? It’s about shifting away from asocial services systems approach to a social change approach that is grounded in awelcoming ideology.To understand “welcoming” as an ideology requires understanding that the dominantstatus of people with intellectual disabilities in society at present is to be separated fromother citizens. In effect, they are a sub-class of citizens with taxpayer-funded mechanismsthat make it difficult for them to rise to full citizenship.I’ve put some colour-coded starts to reflect my view on the progress we are making ineach area, red meaning lack of progress, yellow meaning so-so, and green meaning a lotof progress. I think some of the most surprising progress would be in the area ofemployment. I have to be honest, there are large numbers of people working now where Ijust didn’t see paid employment in their future. They proved me wrong. Sometimes beingwrong is the greatest feeling in the world.
“Can she live a full life without ever solving a quadratic equation?Without reading Dostoyesvsky? I’m pretty sure she can. Can I live afull life without learning to cherish and welcome those in this worldwho are different from me? I’m pretty sure I can’t.”
Let’s talk about the consequences of NOT having a welcoming ideology! They extend farbeyond a poor quality of life or abstract conceptions of human rights and potential. Theyare reflected in society-wide attitudes and practices whereby – by way of example – it is amatter of routine for medical doctors to counsel the termination of Down syndromepregnancies. I am not engaging in the abortion debate here – I am talking about a womanand/or a woman and her partner that was intent on having a baby, and then did not havethe baby as a result of a prenatal screening. Finding that extra chromosome directly resultsin an abortion about 50% of the time (conservative figure).“So what?” some might ask. Isn’t the doctor just doing their job by informing the motherthat they are carrying a baby that is sure to have a terrible life?A recent study in the United States revealed that 99% of parents say they truly love theirson or daughter with Down syndrome; 88% of brothers and sisters say they are betterpeople because of their sibling with Down syndrome, and people with Down syndromethemselves spoke up, too: 99% are happy with their lives, and 97% like who they are. Idaresay those figures are a lot higher than most individuals and families!If you are thinking medical difficulties, their have been dramatic improvements, and theaverage life expectancy for a person who has Down Syndrome will soon exceed 60 years ofage. So what is going on here? More than 80% of doctors admit they have NO trainingwhatsoever as regards providing information about the life of a person with Downsyndrome – and yet they are offering critical guidance as experts at a time when expectantparents are at their most vulnerable.
"If Canadians believe in equality for all citizens, recommendations in this report must be acted upon to ensure our handicapped and disabled no longer suffer the additional hardship of public ignorance.“ (1981)Equality before and under law and equal protection and benefit of law.15. (1) Every individual is equal before and under the law and hasthe right to the equal protection and equal benefit of the lawwithout discrimination and, in particular, without discriminationbased on race, national or ethnic origin, colour, religion, sex, age ormental or physical disability. Canadian Charter of Rights and Freedoms 1982
We recently marked the 30th anniversary of the Canadian Charter of Rights andFreedoms. I choose the word marked, because I realize not everyone in Canadacelebrates the Charter of Rights and Freedoms. I celebrated, and I got caught up in I thinka rather unknown story of how “mental or physical disability” came to be included in theCharter of Rights and Freedoms. It had largely to do with the work of the SpecialParliamentary Committee on the Disabled and the Handicapped of 1981. The chairmanof that committee was MP David Smith, now a Senator. Last week I attended when herose in the Senate to talk about how he and the other committee members wereprofoundly affected by the experience of meeting people with disabilities across thecountry, and from that experience, the were driven to ensure that disability should beincluded in Section 15. It was a non-partisan effort that had MP Smith at odds with hisown Liberal caucus, until, apparently, he literally annoyed Prime Minister Trudeau intobecoming a supporter.I found myself crying a little bit when he finished his speech, and at first I wasn’t surewhy. In preparing for this presentation today, I came to realize that I was upset becausethe Obstacles report that they produced had clearly identified issues that are still with ustoday. I wept for our lack of progress. It’s not that there has been no progress. The basicsafety net for people with intellectual disabilities is much improved. There is poverty, butbasic survival is less in question. But, as it was described in the Obstacles report, it is stilla very hardscrabble life. This is not a welcoming society and we have not embraced awelcoming ideology as part of our national identity.
The split-decision ruling says mentally disabled adults are able togive truthful and reliable testimony, even if they cant explainwhat an oath is. "Adults with mental disabilities may have apractical understanding of the difference between the truth and alie and know they should tell the truth without being able toexplain what telling the truth means in abstract terms.”
If you think I am being unfair, consider this example: 30 years after the Obstacles reportand the Charter of Rights and Freedoms, we’ve just now arrived at a point where aperson with an intellectual disability who does not possess a sophisticated vocabularycan testify against their abuser. At least so says a recent Supreme Court ruling.I can tell you however that it will probably take a long time for this ruling to trickle downthroughout the justice system.I can foresee many future battles for personhood for people with intellectual disabilitiesin the years to come and many more trips to the Supreme Court.
A perfection of means, and confusion of aims, seems to be our main problem ~ Einstein
This is hot off the presses: down south a big battle is already underway, and although therewill obviously be some differences, it could be coming to a province or country near you.The strength of the Americans with Disabilities Act in the United States is helping facilitatesome interesting developments, including this very fresh news of the US Department ofJustice jumping in to comment on a class action suit against the State of Oregon for theclosure of sheltered workshops.The basic argument of those who brought the suit is that a sheltered workshop – wherepeople with intellectual disabilities are congregated in a work like setting and work forwages that are usually far below minimum wage – is NOT an accommodation of disability,but instead an unfair assumption about lack of worth in the labour market and in society.I am not suggesting for a minute that real employment for people with intellectualdisabilities is easy. There will be a need for a great deal of creativity. But progress will neverhappen if we continue excusing the problem by creating work-like environments such assheltered workshops that continue to send the message to the community that peoplewith intellectual disabilities do not belong and are incapable of belonging in community.
Prison of Protection Protect from Sexual Information Vulnerable Protect from Protect from Relationships Decision-MakingAbuse information: Person Adapted from: Dick Sobsey Protect from David Hingsburger (Google him) Society (Google him)
Most people with intellectual disabilities don’t find themselves shackled by the courts,they find themselves shackled by something that Canadian Disability Hall of Fameinductee, author, and speaker David Hingsburger calls The Prison of Protection.Here we see the Prison of Protection, which one could view as a guide for how toconstruct a vulnerable person – don’t tell them about sex, protect them from unpaidrelationships, make sure they rely on others to make decisions, and make sure they areafraid of strangers. That’s a great way to create victims, and the system is doing a greatjob of it. Professor Dick Sobsey at the University of Alberta is in my opinion the world’sleading expert on the mistreatment of people with disabilities. He has been trying fordecades to draw attention to the elevated rates of abuse for people with intellectualdisabilities, which is 8-10x higher than the average citizen.And yet all of this is done to people with intellectual disabilities, often with the best ofintentions, and usually in the name of risk prevention and safety. To be clear, this is notsolely about human services systems. We also see this coming from families. A lot of ourwork at LiveWorkPlay is about helping individuals break free of a prison of protection thathas been imposed by their own family members. This is of course particularly difficultwork, given the family members may not share the perspective that these restrictions aredetrimental. Or, more likely, they may believe with 100% certainty that life outside of theprison of protection is simply too dangerous.
The issue of decisions is particularly important, and this is a real barrier to full citizenship.We need to find a way that a person with an intellectual disability who has their ownapartment and a paid job doesn’t get turned away when they try to open a bank accountbecause they aren’t competent to understand the small print – or like the rest of us, theydon’t have the skills to fake their competence.The United Nations Declaration on the Rights of Persons with Disabilities, which Canadahas signed and ratified, proposes that we should be developing a method of supporteddecision-making, whereby a person can have a legally recognized system of getting helpwith their decisions without giving up the right to be in charge of those decisions and havethem respected before the law. There is some progress here, and some interestingdevelopments in British Columbia with other provinces starting to move towardsproposals and solutions.
ACTUAL CONVERSATION(me and bowling alley staff) Did you want me to put up the gutter guards? Why? Well, aren’t some of them special needs people? We just want to bowl. But it’s no fun if the ball always goes in the gutter. Thanks for your concern, If we can’t even bowl but that won’t happen. together, surely all hope for But aren’t some of them a welcoming society is lost?like, Special Olympics people?
You may recall back in 2009, President Obama appearing on the Tonight Show made ajoke about being such a bad bowler that his skills were appropriate to the SpecialOlympics. I was kind of hoping his faux pas might lead us into a public debate tochallenge the value of Special Olympics, but instead it turned into Obama apologizingprofusely about how great Special Olympics is and how much respect he has for theathletes. Let’s think about that for a minute. If we really respect Special Olympicsathletes, why can’t they just bowl with the rest of us?I find it somewhat ironic that the US Department of Justice is supporting a class actionlawsuit for an end to segregated employment in sheltered workshops in Oregonbecause they see the harm of segregated employment, and yet segregated sportscontinues to be celebrated.Bear in mind I’m NOT saying that if a group of people with disabilities want to hangout together formally or informally for sports or any other reason shouldn’t do that.What I am saying is Special Olympics was created back in the 1960s as a response topeople with intellectual disabilities being excluded from sport. Some 50 years later,shouldn’t we have arrived at a point where Special Olympics has become irrelevant?Why is it taking so long for us to learn to bowl together?
One of the consequences to the systems model or medical model for people working inany field related to intellectual disabilities is that it seems we are forever doomed to ascarcity conversation. If we believe in supports and services that segregate citizens withintellectual disabilities from others, then no matter how much money we have, it’snever going to result in people with intellectual disabilities achieving full citizenship,with all the rights, responsibilities, risks, and rewards that it entails. The best we canhope for is to do a wrong thing well.If we shift to a community model, or social model, or social change model, there islimitless capacity for change, because the community already has all the answers. Thereare apartment buildings. There are workplaces. There are recreation centres.The challenge before us therefore should be how to include people with intellectualdisabilities in that abundance, rather than how to maintain the outdated outputs andunsustainable expense that has resulted from the proliferation of systems thinking.
HOW TO SUPPORT INCREASED SOCIAL CAPITAL FOR PEOPLE WITH INTELLECTUAL DISABILITIES MORE ONLY AS NEEDED Family Friends Workers Colleagues Staff Co-Workers Doctor Classmates Psychologist Neighbours PsychiatristMaybe we’re not Spouse Social Workerrocket scientists?
This can all get very complicated, and when I try to discuss these issues in a systemscontext, it is very hard to maintain a focus on the prize:A welcoming community.Which in turn results in a radically improved quality of life for people with intellectualdisabilities and better communities for all.Most of these systems were set up in the first place to address inequality, but over time,while addressing some problems, they created others, and in particular have served toreinforce the second class citizenship of people with intellectual disabilities.I want to emphasize that for me this is not about saving money, and yet, at the sametime, if we increase the green items in the list above, the cost is much less than if weincrease the orange items, and really, who among us wants to be spending more timethan necessary with the people in the orange list? We can respect their work andappreciate it when we need it, but it’s not my goal in life to accumulate thoserelationships, I’m sure it’s not yours either, and we shouldn’t expect people withintellectual disabilities to think any differently.
More Albert Einstein… If we knew what it was we were doing, it would not be called research, would it? The world is a dangerous place to live; not because of the people who are evil, but because of the people who dont do anything about it. We cannot solve our problems with the same thinking we used when we created them. All that is valuable in human society depends upon the opportunity for development accorded the individual.
That first quote is for you, please don’t play safe in your future research choices.Help inform the world.You can’t solve all the worlds problems, so my suggestion is to pick one, and do yourbest.As a follow up to that, you will need to team up with other people, but if theyschedule a year of weekly meetings to solve the problem of having too manymeetings, look elsewhere.Systems are a reality. They are necessary. But when you find yourself struggling todetermine the value of a particular proposal, endeavour, or activity, ask yourselfhow it supports the development of the individual. I challenge myself with this allthe time. Sometimes we have to compromise, but being aware that you arecompromising is sometimes the best we can do.
We need more than a systems adjustment. We need an ideological revolution. You’re welcome to join in.People with intellectual disabilities are valuable contributors to community diversity and the human family.