I’m all for a good news story.

Trust me I have been using every search engine, meta tag, and google alert I use to find one. Unfortunately this story (even if this sounds like one on first blush) IT IS NOT.

Part of being a writer, advocate and human rights supporter, is being able to suss out what LOOKS good from what IS good.

Thus today I bring you the story of a fabled, and beloved football player whose idea of supporting the community of people with disabilities is to build (yet another) segregated, non-inclusive building where people with disabilities can languish while they learn the skills which will ultimately make them less disabled and easier to include.

According to the Phinsider, (a sports news outlet) Dan Marino and his foundation have plans to open a special needs college of sorts.

Marino’s son Michael was diagnosed with Autism when he was two years old. Since that time the Marino Foundation has focused on raising money to support worthwhile disability services and supports.

This is where the wheels fall off.

“The college would be located on the 400 block of North Andrews Avenue, and would utilize nearby apartments for students. The enrollment would cater to students from age 18 to 28, all of whom are diagnosed with autism, Asperger’s syndrome, Down syndrome, or other developmental disabilities. The school is aiming to open in the fall of 2013, with a student body of around 60 for the first semester. The school anticipates an annual tuition of around $7500 for the two-year program, and would be divided into trimesters.”

Let me see if I understand. This foundation aspires to build a segregated school where young men and women (who have already spent up to 17 years in the school system) can both live and be educated until they reach 28 years within a “college-like” setting exclusively with other people with disabilities.

Okay I’m going to have to throw a flag on this particular play.

Here’s an idea Mr. Marino, why not spend some of the foundations resources on enhancing the programatic supports that exist at lots of different University and College campuses, legitimate educational institutions that recognize how much richer their academic and campus life are because the inclusion of students with disabilities.

This is one more example on how we seem to continue to be bound and determined to delay and deny the inclusion of citizens into into real community.
I’m sure this facility will look like a college, and function like a school. But scratch the service and I’ll bet dollars to footballs that you will find “can stacking” and “life skills”, on the curriculum.

Please Mr. Marino, don’t open another segregated, day program, and residence. Dream bigger for your son and all of our sons and daughters.

Invest in what gives people with disabilities a REAL LIFE, that being access and supports to have a REAL LIFE, in our community, schools, and workplaces.

Harder to put a plaque on definitely, but abundantly more meaningful.

A Letter from Simon Flint

I am abundantly proud to introduce you today to a very talented guest blogger. Now admittedly I may be somewhat biased, as the blogger in question is my 12 year old son Simon Flint. Simon’s class (and I think all elementary school students in Alberta) were asked to write, draw, illustrate or communicate in some way with the Honourable Thomas Lukaszuk Minester of Education. Students were asked to tell the Minister what would make their school better. I am thrilled to share Simons letter with you.

Dear Minister. Lukaszuk

 

My name is Simon Flint I am a student at Elboya school in grade 7 I would like to share some ideas with you. First I think that school should be about more than tests. After your done university or college you really don’t do many pencil and paper tests any more. You get tested in the important stuff like being strong, brave, and kind.

 

In school you spend all you time learning what’s going to be on the next test you will have to take. But when you get out of school things will be a lot different than what they had led you to believe. Life isn’t all about tests, it’s about people and our family and friends. We should spend more time on that. There are different ways of evaluating students besides tests, like projects where everyone gets to work together. Test us on how well we do that! Not everyone does well on written tests.

 

I also think that students with disabilities shouldn’t be pulled away from their learning to go work alone with an adult. Most of the best learning happens in a group when you can bounce ideas off of other people .We can’t do that if we are all alone. They also should be able to participate in class discussions. They also shouldn’t be put in a class with all people with disabilities. They shouldn’t be treated like they’re different-they should be treated like every other person.

 

Finally I think that schools should be more involved with the arts. We have 3 art programs at Elboya, art, drama and music but that’s it. Lots of people don’t even get those as options, and you only get 45 minutes of each one each week. Art is important. It gives us dreams.

“It gives us dreams” I couldn’t have said it any better my self Simon.

Distrust, Disrespect, Discrimination

My latest round up of news from around the world on the state of Human Rights for citizens with disabilities seems to to chock full of stories about the ways in which these rights are being trampled on.

Let me take you first to Texas where 18 year old Ryan who has Autism and his family have taken his school to court to try to secure the supports he needs to be successful. The school contends that while Ryan has “Medical Autism he does not have Educational Autism” which makes accommodation in school unnecessary. I’m sorry WHAT????Rhetoric and justification knows no bounds folks. Check out how this families concerns are being dealt with in the Texas legal system.

Click here to view the video on YouTube.

Then there is a disturbing case, reported by ABC news.   This piece investigates the case of of an 8 year old little girl who has been banned from her community Girl Scout Troop, because she has Autism. While her parents and leaders alike admit that she posed no threat to herself of others during the meeting, ugly stereo-types and inaccurate stigma attached to the label of Autism will keep her from participating in this neighbourhood club dedicated to diversity, service and community development.

Click here to view the video on YouTube.

Seems to me, the folks that run this troupe need to read the law of Scouting a few more times.

I will do my best to be
Honest and Fair,
Friendly and Helpful,
Considerate and Caring,
Courageous and Strong, and
Responsible for what I say and do,
And to
respect myself and others,
respect authority,
use resources wisely,
make the world a better place, and
be a sister to every Girl Scout

Hmmm….Not so much

There are National Laws, United Nations Articles, and Human Rights Tribunals in place to ensure that citizens with disabilities have free and equitable access to medical care, community clubs, and equal protection under the law (and thank-goodness there are). In this writers humble opinion, what might be most compelling and effective in these kinds of situations, would be the outcry and indignation of families and citizens who DO NOT have (or love someone with) a disability. If you think that your community, school, scout group, curling club, neighbourhood or workplace is better because of the participation of citizens with disabilities. Speak out, talk about it at every opportunity! This is not a movement about disability. This is a social imperative that should we ignore our role as allies and victims regarding this kind of injustice, we do so at our own peril.

How DARE anyone try and keep people with disabilities out of MY children’s lives, OUR experience as a family, and MY community.

I know how much richer our experiences in this world are because of diversity and inclusion

No more I tell you. Not on my watch.

It’s Mental Health Awareness Week in Canada. I am re-visiting an issue I have written about a great deal over the last years. Dual Diagnosis-The Intersection of Disability and Mental Illness. For years clinicians and service providers alike thought that a developmental disabilities and mental illness were mutually exclusive categories. Whereas in reality if the social indicators for mental illness include isolation and loneliness, you can count citizens with developmental disabilities as some of the most vulnerable( in terms of developing mental illness) in our communities.

The Chasm Between Diagnosis and Intervention

A Closer Look at the Dual Diagnosis of Developmental Disabilities and Mental Illness

To be vulnerable is not to be in jeopardy. To be vulnerable and isolated is the matrix of disaster. – Willard Gaylin, M.D.

Adrienne (a single adult woman with Down syndrome, age 35) had been living in a supportive independent living setting with three roommates for four years. All the women that Adrienne lived with were close to her age, one had a developmental delay, and all were women with whom Adrienne had chosen to live and share a home with. Adrienne traveled by public transit daily without assistance to her job working at a local coffee house. Adrienne counted among her co-workers and regular customers many friends with whom she enjoyed going to movies and participating in a local community garden co-op. Adrienne experienced a terrible loss when her mother unexpectedly died. It was soon after this period that Adrienne’s friends and paid support people began to see significant and numerous changes in her behavior. Adrienne became listless and overly tired much of the time. She began missing work and showed little interest in activities and friends that had been so central to her life. She began to struggle with decision making-which made independent travel on public transit impossible. She became so confused and disoriented on one bus ride that the driver felt compelled to call the police when Adrienne seemed unable to answer the simplest of questions about her destination or her home address. Adrienne began to struggle with some basic self care skills, often forgetting or refusing to brush her teeth or comb her hair. She lost critical verbal skills and complained of vague pains in her abdomen and in her head.

Soon the service provider that supported Adrienne in her home and work life, felt her physical condition had become so deteriorated that an appointment with her general practitioner was scheduled. On the day of her appointment a paid support staff accompanied Adrienne to see her doctor.

Adrienne’s doctor asked Adrienne many questions, many of which Adrienne did not answer. Adrienne’s doctor asked Adrienne’s support staff many questions – many of which the staff did their best to answer. The doctor completed a thorough and sensitive physical exam of Adrienne. At the completion of the exam Adrienne’s support staff attempted to share with the doctor some of the significant events that had transpired in Adrienne’s life recently like the death of her mother. After listening patiently for a few minutes the doctor, with authority, waved his hand in order to end the discussion and pronounced that the reason that Adrienne was exhibiting the symptoms described was because she had Down syndrome and that “we often see a deterioration of skills and competencies in people like Adrienne as they reach advanced age.” At the age of 35, Adrienne’s doctor proceeded to prescribe a greater level of care and a more custodial approach to Adrienne’s support needs. He suggested her job had probably proven too difficult for her level of comprehension and was causing her undue frustration and concluded that the best course of action would be to significantly decrease the activity and business in Adrienne’s life to a schedule that would be more befitting someone with Down syndrome.

Stories like Adrienne’s have become all too familiar on the landscape of service provision and support to citizens with developmental disabilities across North America.

As a result of the chronic pathology of disability within the medical model construct it proves difficult for physicians to see citizens with developmental disabilities as complex, sometimes gifted, sometimes deeply wounded individuals, at risk for the same physiological and psychological implications of isolation and loneliness as the rest of the population. The existence of the label of developmental disability is considered to be all encompassing and is often perceived to be the single greatest determinant of predicable wellness in a person’s life.

“I’m a regular person, a regular person who has Down syndrome. I like music and film making – it’s not right to treat a person only like their disability” Justen Desouza Canadian Down Syndrome Society Advocacy Research Advisor

Indeed, if citizens who are among the most poor, most vulnerable, most isolated and most marginalized of Canadians, are at greater risk of depression, anxiety, and loneliness than the general population then the incidents of mental illness are understandably higher in the population of Canadians with developmental disabilities.

Historically citizens experiencing mental illness have been met with the most demoralizing forms of stigma and misinformation. Within the hierarchy of disability, the only condition more publically scorned and detested has been that of developmental disability. These two labels manifesting themselves in a single citizen, often proves to be a too onerous a social/political obstacle for many people to overcome.

“Psychiatric disorders are one of the main causes of secondary disability in the developmentally disabled. It has been estimated that 17% of persons with developmental delay have also experienced mood disorders. Studies have shown that 18% of developmentally delayed children have significant psychopathology and 59% of intellectually disabled adolescents have mental health or behavioral problems” (Dual Diagnosis Task Force of the Public Policy Committee of the Canadian Mental Health Association, Ontario Division, 1998).

Many primary care physicians are hesitant to provide a formal diagnosis of mental illness or psychiatric disorder because of the perception that a full investigation of existing socio-psychological conditions is impossible. The Family Physicians Guide (See Appendix A: Developmental Disabilities) offers a variety of guidelines. These guidelines include sensitivity to a variety of patient communication methods, creative therapeutic interventions, and consideration for a wide spectrum of learning styles in patients with mental illness.

Citizens with developmental disabilities can, and sometimes do develop a full spectrum of psychological and psychiatric disorders. Contrary to popular belief – arbitrary IQ scores are not an accurate indicator of the possibility of successful treatment. Often by the time citizens with developmental disabilities are seen by a medical practitioner, symptoms of mental illness have become so acute that they present themselves in behaviors (often called acting out) that are injurious to the individual themselves or to the people around them. In the most devastating of situations this kind of spiral of non-treatment and misdiagnosis can lead to the use of both medical and physical restraints – approaches proven to be unsuccessful in mediating people’s behavior in all circumstances (Basic Principles in mental Health in Developmental Disabilities).

Poverty and a lack of monetary resources are also important impediments to consider when examining the lack of utilization of community medical interventions for citizens experiencing mental illness. The inability to move beyond traditional primary care physicians, to accessing specialized psychological services related to mental health often results in well intentioned medical practitioners prescribing powerful psychotropic medications, in lieu of psychiatry, counseling and a greater examination of social factors at play in the life of the patient (Ryan, 1993).

Many disability activists advocate for a common sense and about the power of prevention in terms of stemming the tide of loneliness, and marginalization which contribute to the lives of loneliness that people with disabilities often lead.

We met an elderly neighbor of ours, at the volunteer Fireman’s Pancake Breakfast. He was having a second pancake at one of the long tables across from us and was telling us about himself…One of the problems that he was having was that he has been steadily losing weight, to the point that he was very thin and frail. He went to his doctor – and what did his doctor do? He asked him if he ate alone. “Sure, I eat alone all of the time,” Old Mr. Wickham told him. “Well you shouldn’t do that; make sure you always eat with somebody else.” “So I did” he told us…”and you know what-it worked” (Schwartz, 1988).

It’s the relationships we have to each other that illuminate the darkest parts of our world. In our schools, in our workplaces, and, in our communities this single, simple truth remains. We exist for each other, and in each other we can often find the most powerful remedies for the greatest of our pain and suffering.

Works Cited or Consulted

• British Columbia Ministry of Health Services. (2007). Family Physician Guide: For Depression, Anxiety Disorders, Early Psychosis, and Substance Use Disorders. Victoria, BC.
• Dual Diagnosis Task Force of the Public Policy Committee of the Canadian Mental Health Association, Ontario Division. (1998, June). Dual Diagnosis: People with Developmental Disability and Mental Illness – Falling Through the Cracks. Retrieved May 24, 2009, from Canadian Mental Health Association: http://www.ontairo.cmha.ca/backgrounders.asp?cID=23090
• National Association of State Mental Health Program Directors. (2004, October). Serving Individuals with Co-occuring Developmental Disabilities and Mental Illness: Systems Barriers and Strategies for Reform. Alexandria, VA.
• Potonyak, D. (2008, June). Loneliness is the Only Real Disability: Implications for Policy Makers. Blacksburg, VA.
• Ryan, D. R. (1993). Dual Diagnosis. Human Sciences Press .
• Schwartz, D. B. (1988). Medical Advice. In J. M. David B. Schwartz, A Story That I Heard (p. 27). Harrisburg, PA: Pennsylvania Developmental Disabilities Planning Council.

The Most Disabling Condition.

Dr. Anne Snowdon has published her report “Strengthening Communities for Canadian Children with Disabilities”. Commissioned by Human Resources and Skills Development Canada, the study concludes that most children with disabilities in Canada are isolated and can count few if any meaningful and reciprocal relationships in their lives outside of their immediate families.

“Communities tend to have more opportunities for children in the zero-to-six, maybe zero- to eight-year-old age range, but when we’re working with children who are 18 or 21 or 24, there are many, many fewer opportunities,” she said in an interview…When families were asked to describe their child’s friendships with peers, 53 per cent said their child has “no close friends” or only “one close friend.”

It’s a subject that “really reaches at the heartstrings when you talk to these children and their families,” said Snowdon.

“More than half of them had one or had no friends. So that is a very compelling red flag for me, that we need to work harder in our communities to help them maintain and to really build those social networks beyond no friends, and-or just one friend, because we all know nobody really thrives with just one friend.”

Sometimes the very foundational systems we put in place to provide children, with care, early intervention, special settings for education and sports, can be significant contributing factors to their over all loneliness, these systems can create barriers and a gradual but profound shift from real community into a life of paid service delivery.

Everyone needs a foundation. A strong, rock solid foundation in community. One that is based one shared interests, commonalities, even geography. Relationships that are real and alive and enduring bloom and foster in naturally occurring settings based on things that kids care about or are good at, not in places where children are grouped together based on what the community perceives to be most broken about them. This is the grounding and connection that all human beings need to thrive.

We know that for some of our most vulnerable citizens that foundation can be crumbling, deteriorating, and in the most devastating of situations virtually non-existent.

Citizens with disabilities are often people who have lived at the mercy of service delivery, lived lives lacking in unpaid relationships, who have lived in institutional settings, folks who float through this life with nothing that connects them in real and meaningful ways to the world and to it’s communities.

This lack of terra firma, of relationships, of love, or friendships sets us afloat in this life, occasionally touching down to get a taste the real flavour of family. Then before the gravity of respect, rights, or the ties that bind us to each other, get a firm hold on the legitimacy of citizenship, identities are often reduced and erased by shifting government priorities, vanishing funding, and rhetorical policies. These observers become tourists in their own lives, floating off again into the atmosphere… Such is often the reality for many citizens with disabilities.

Perhaps Simon and Garfunkel got it wrong…perhaps the problem is not in being a rock, but in being a rock who doesn’t know how it got to be a rock, or how it relates to other rocks…. Maybe the secret is in understanding how all the rocks make up an island…Like John Donne said…”No man is an island, entire of itself; every man is a piece of the continent, a part of the main.”

Who is a part of your “main” and who can we help bring to the “main” of people with disabilities in this world…for whom isolation and loneliness keeps them from attaching to the soil and sinew of this life.

For The Love of #$%# Bowling!

There is nothing about having Down syndrome that can keep this dancer from kicking some competitor butt at a REGULAR-thats right I said it-Not At ALL Special-National Ballroom Dance competition. Teddy Kremer 29 took first place in the Foxtrot, Tango and Waltz in Covington Ohio last week. Teddy Kremer began taking ballroom dancing lessons at a dance class exclusively for people with Down syndrome. Lets hope bringing the National Tittle will finally give him the opportunity to perhaps be an instructor at some community dance studios.

Then there is this…Now I have a reputation for being down on bowling for people with disabilities. It’s not that have any particular distain for the sport. What I object to is the notion that if you are disabled and express an interest in sport, you seem to get sucked onto this weird vortex that spits you out at the nearest bowling lanes, in the middle of the day, when no one else is playing because they are all at work or school. I don’t see it as a vehicle for meaningful inclusion. Surely we can do better. If disability truly does cut across all gender, socio-economic, cultural and geographic boundaries…then surely not EVERYONE with a disability will have a burning desire to bowl.

For me this video says it all. Notice the broadcasters, syrupy sweet voices when they bemoan their own poor bowling scores…and how astonishing it is that “people like this have such proficiency in the sport”. You might also note the fact that while this Special Olympics bowling league is practicing at the UCC lanes, you are hard pressed to identify another living soul in the lanes except for the instructors and Special Olympians. So much for inclusion and facilitating the opportunity to develop meaning community relationships.

Whose for changing the poster sport for people with disabilities to golf, or ski jumping.

This is a stereotype that just will not go away.

Let the haranguing begin. Strike away folks!

Life Saving Transplant Denied As Child has Developmental Disability

So much of the work Inclusive Humanity has been engaged in over the last years has been in conjunction with groups and individuals who see how people with disabilities are made vulnerable within the medical community. Groups like the Vulnerable Persons Network in Manitoba, the Euthanasia Prevention Committee in Canada, The Informed Decision Making Task Force out of the US, and the Values and Ethics Committee of the Canadian Association for Community Living are working hard to create broader public discourse on these imperative issues. It has become abundantly clear-in the thinly veiled language used in Grand Rounds, in the recommendations set out by highly touted medical organizations, and more recently in the exclusion criteria set out by some Regional Health Districts in response to a medical scarcity paradigm relating to the possibility of an H1N1 outbreak-it is open season on people with disabilities.

As recently as 1995 the University of Alberta Hospital in Edmonton was forced to reverse their decision and allow 17 year old Terry Urquart to be placed on the organ transplant waiting list as he required a lung transplant as a life saving surgery. The hospital board of ethics had previously stated that due to the fact that Terry had Down syndrome, his developmental disability made him ineligible for the waiting list.

Once again a North American Hospital has refused to allow life saving transplant surgery, this time in at Children’s Hospital of Philadelphia, 2 year old Amelia has been denied the same right. Amelia lives with Wolf-Hirschorn syndrome a genetic condition that often includes developmental disabilities. The Dr. in charge of Amelia’s care has been very clear in his statement on the wisdom of donating organs to “children like Amelia”…”"Amelia would not be “eligible” for a transplant even with a family donor because she is “..already brain damaged and mentally retarded.” Rivera recounts a very painful exchange that followed during which she said:

“So you mean to tell me that as a doctor, you are not recommending the transplant, and when her kidneys fail in six months to a year, you want me to let her die because she is mentally retarded? There is no other medical reason for her not to have this transplant other than she is MENTALLY RETARDED!”

Rarely have we seen this kind of overt discrimination and direct violation of the UN Declaration on the Rights of Citizens with Disabilities. I guess we are finally seeing the actualization of what we have long suspected and experienced to be true about the value the general community places on a life with disabilities.

We can no longer afford to bury our collective heads in the sand and dismiss the experience of so many individuals with disabilities and their families in the hospital settings as being the exception to the rule.
The time to wage this battle/campaign is now. For I fear if we continue to wait, we will have no one left to fight for. Each of us individually will come under untenable scrutiny as to our worthiness to belong, to be loved, and to be cared for, and ultimately to live.
We have much to learn from the social justice movements that have gone before.

Here is to Martin Luther King Junior Day:

“We know through painful experience that freedom is never voluntarily given by the oppressor; it must be demanded by the oppressed. Frankly I have never yet engaged in a direct action movement that was “well timed,” according to the timetable of those who have not suffered unduly from the disease of segregation. For years now I have heard the word “Wait!” It rings in the ear of every Negro with a piercing familiarity. This “wait” has almost always meant “never.” We must come to see with the distinguished jurist of yesterday that “justice too long delayed is justice denied.” Martin Luther King Junior

The “Spread the Word to End the Word” Campaign” has been getting a lot of public relations play lately while I think eliminating this word from our commonly used language is a worthwhile and important goal-I’m just not sure we can get there from here. Here is what I mean.

Given the relatively recent and tragic passing of Dr. Wolf Wolfensberger, the Grandfather of Social Role Valorization and Normalization, I feel inspired and a little brazened to blog about the social messaging inherent in Special Olympics.

Dare I say it? With tremendous respect for the decades of awareness and goodwill that Special Olympics has brought to the contributions of citizens with disabilities in this country and around the world, I wonder if it’s time that we begin to insist that our communities welcome and include citizens with disability into community sporting opportunities – just as we are doing in employment, living, and education. For as long as a parallel system exists, there is no impetus for the community to do what is right.

Recently North America marked “Spread the Word to End the Word” day – a spectacular and profoundly important initiative. This initiative has been created and stewarded by the Special Olympics.

The greatest injustice is probably not what the “pity peddlers” (to borrow a phrase from one of the greatest thinkers and writers of social justice and disability, John McKnight) would have you think it is. Is it me, or is there somewhat of a contradiction between the rights based social marketing campaign to eradicate this hate proliferating word from our vernacular, and the benevolent and charitable industry that is Special Olympics?

In what universe is it impossible to include a nine-year old in community sports teams? I have heard the arguments about the importance of ensuring Special Olympics exist for adults with disabilities “because there is nothing else out there for them”. I’m not sure where this is true, because in my community I might be the worst volleyball player ever, but if I have enough coin in my pocket to buy a round of beer after our rec. league game at the community centre then I am welcomed with open arms!

It is little wonder why so many in the field of education, employment and community living can’t figure out what it is we want for the people we love who have disabilities.

We want them to experience the richness and messiness, and ordinariness of friends, and homework, and parents that embarrass them.

We don’t want them separated from their classmates, in special classrooms, or special schools, or on special buses.

We want them to develop careers that nurture their souls and inspire their interests and connect them to other people in meaningful ways.

We want them in and with!

We want teachers and administrators who understand their unique learning styles and use the inclusion of kids with disabilities in classrooms to create broader and more all – encompassing teaching techniques, which will enhance the classroom and learning outcomes for all kids.

Lets pull it together people! If we don’t want our children taken out of the regular routine of the school day to learn life skills, how to stack cans, do school janitorial duties and recycling, to be segregated, isolated, and marginalized – grouped together by something the community has largely considered to be broken about our children – then we can’t allow them to be separated by something equally segregating but dressed up to look more acceptable.

If Justice and Equity is really all we want with and for people with disabilities, then we have to start playing by the rules that we set.

Separate is never equal.

Sometimes we have to recognize when initiatives contain the elements of “same product, different packaging.”

Here is some GOOD NEWS!

We have known for a long time that inclusion in schools was good for students with disabilities but we haven’t been very good at talking about why it’s good for students without disabilities. Sure we have extolled the civic and moral benefits of inclusion but finally we are seeing research that definitively documents the academic benefits for all students inherent in an inclusive classroom.

John O’Connor journalist for the Stateimapct research study out of Florida reports that including students with disabilities in regular classroom in community school is not just good for students with disabilities, but also improves the academic outcomes for students without identified disabilities.

“Julie Causton-Theoharis has researched the effects of inclusion on students with disabilities and those without. Research shows both benefit from being in the classroom toghether, she said.”

“Researchers say those enrolment patterns matter because evidence shows both students with disabilities and students without disabilities learn more when placed in the classroom together.” and that “right now we’re pretty excited by the academic achievement gains of students with disabilities in inclusive settings. The other piece that’s a little surprising is the academic gains by students without disabilities.”

Communities, work places, and classrooms are richer, stronger and more healthful for the contribvutions of citizens with disabilites. But heck it’s good to finally see in a research project. Yah Florida!

Cheaper, more Accessible Prenatal Screening-Keeping Out that Which is Unwanted.

Three major pharmaceutical companies in the US have been vying to bring cost effective prenatal screening tests (using the new protocol of using a single maternal blood sample to prenatally determine Down syndrome and some 64 other conditions) for some time. In fact Sequenom’s test “MaterniT21″ is currently available for patient access in 20 US markets. Meanwhile Aria has come out in the financial pages with an announcement of a new test that will cost far less than it’s predecessor Sequenom and it’s competitor Genzyme.” Aria is not the first company to offer such a test, but it plans to do so for a fraction of the price that Sequenom currently charges per test. “…Sequenom’s cash price for its MaterniT21 test, launched in October last year, is $1900. Song says Aria’s test will cost “hundreds of dollars,” but declined to be more specific. For the Aria test, the blood from the pregnant mother can be taken in a doctor’s office. Aria will do the testing in its lab in San Jose.”

So as the cost of deselecting Down syndrome from the human family decreases, the ongoing commodifying of the lives of citizens with disabilities and the technology used to make these lives obsolete becomes cheaper and more accessible.

But what is the real cost? Where is the greater public discourse on what it would mean to our existence is we no longer had citizens with Down syndrome, dwarfism, Trisomy 18, and 13 or cleft palate in the world? What other conditions might become less valuable and more of a target for prenatal elimination in society?

In Canada women have the legal right to make decisions about the progressions of their pregnancy. But what constitutes “informed decisions”? If the conditions of life for your unborn fetus are described to you in way a way that makes their existence seem untenable-is it little wonder that 80-90% of pregnancies with an early determination of Down syndrome (using the old prenatal technology of Triple Screen Blood Tests) end in termination?

When this writer met with the Executive Director of the Society of Obstetrics and Gynaecology in the spring she agreed that what Canada desperately needs is fair and balanced information in the prenatal setting, about not just the challenges of of a life with disabilities, the but joy and benefits inherent in it. Thank-fully organizations like the Canadian Association for Community Living are heeding the call for this type of material.

The question lingers-who will pay to produce it and can we come to some mutual understanding on what fair and balanced information is? That remains to be seen. Lettercase / Cannister Marketing company has created a wonderful plain language booklet that does the job (complete with references for support for all three options when facing a pregnancy in the US, but they have faced the same dilemma Canada will. Who will pay, the Pharmaceutical companies, the medical community or non-profit advocacy groups? It seems to this writer in order to come together, we need to start to talk. Because what I know to be true is that these tests are coming to Canada-and coming soon. Wouldn’t it be wonderful to have these resources in place before the tests are available at your local medical clinic or Dr.’s office?

Women have the right to make informed decisions…the simple existence of this test (one that could serve to eliminate Down syndrome entirely) says a lot about where the community stands on the value of a life with disabilities. There is an awful lot to do. Finding common ground in respecting the rights of many groups of vulnerable citizens is a good place to start.

If you would like more information on the current state of prenatal screening in Canada and in the US, please feel free to contact me at the co-ordinates below. Inclusive Humanity offers facilitated dialogues, roundtables, and workshop/lectures on this topic and many others.