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Location: Toronto, Ontario, Canada

Writer/Curator/Founder of The Autism Acceptance Project. Contributing Author to Between Interruptions: Thirty Women Tell the Truth About Motherhood, and Concepts of Normality by Wendy Lawson, and soon to be published Gravity Pulls You In. Writing my own book. Lecturer on autism and the media and parenting. Current graduate student Critical Disability Studies and most importantly, mother of Adam -- a new and emerging writer.

“There is no hope unmingled with fear, and no fear unmingled with hope.” -- Baruch Spinoza

Friday, October 03, 2008

 

More Thoughts on Inclusion


Untitled from CS on Vimeo.

This video raises some very important points.

Once in a while, those who have expressed interest in inclusion have asked for my ideas. In this post, I am not representing anyone, although I might express myself as having shared some stories and experiences with other families and friends of mine with disabled children. This post is a sort of life as WE know it version of why "inclusion" is really important to our family. What do we mean by it?

Just this week, I had been told another story by a mother of a 16 year son with autism that his public "inclusive" school (which name I cannot divulge) continues to do the following (please notice "inclusion" is therefore represented in quotation marks for a reason):

- continues to bus disabled kids in and out before anyone can "see" them;
- silently condones cyber-bullying of disabled kids and enforces a double standard (not okay for "normal" kids but okay to bully autistic and other disabled kids on YouTube);
- puts paper over the windows of "special ed" windows so no one has to look at them (in the name of 'kids might get distracted');
- limits number of deaf students for ASL teaching (which by the way from the deaf community, should be, as the deaf community has advocated for years, opened up to everyone as we would French, Hebrew or whatever -- learning ASL as second, third language).

Also, this boy, because he is autistic, was assumed in his neighbourhood to be a suspect in a series of recent assaults. His mother (who is a fellow grad student of mine at York U), was one of the first to be contacted by police. Therefore, it is generally assumed, due to historic pathologizing of disability, and media anaesthetising of the public with that myth, that autistic people are generally "aggressive perpetrators." In truth, the boy does not go out at night, dislikes the touch of others due to his sensory challenges, and can't wear the wool hat the suspect wears because like many autistic people, he cannot stand wearing anything on his head.

Inclusion and acceptance are not fictional, but all it takes is a look at that example, among so many others, to make you think so. That school does not demonstrate real inclusion and it is with such examples on which we must reflect. These are fictions, not realities and we must ask why. As families and fellow disabled citizens, we need real acceptance and inclusion badly. As a grad student of Critical Disability Studies myself, I can tell you that we have a lot of work to do.

As for my son Adam, as a mother I have to ask the following:

- what are the chances that he becomes the victim of such accusations and bullying when he turns 16? and,
- what will our choices be in his lifetime -- for high school, university, friends, and other programs where, it seems, we have to justify his right to participate almost every day??

Thankfully, his experiences at his current school have been exceptional. I don't know of any other school who would have accepted him and allowed him to grow as he is, and he continues to do well. The children who know Adam so far, accept him for who he is and at Day Camp this year, he was deemed the "most popular kid" by counsellors and "typical" peers. Just think -- a non verbal kid (one who does not always "look you in the eye") the "most popular kid." Continue to imagine...

Outside of these worlds, however, and for families who do not have the same access, it seems we have too few choices. Adam is often barred from participating in many weekend programs because he requires an assistant, even though he does perfectly well with support. Instead, mom has to go in and explain, and be the best diplomat and teacher in the world! Certainly an exaggeration, but I wonder if other families can imagine what that is like? There are most certainly families who are confronted with more difficulties in this regard, who do not have the resources, energy or resolve. While it's exhausting, however, I will not stop. As a family, we simply want the understanding and access. We want to be connected with our community! We feel it is ours, and Adam's, right.

It's usually expected by us to make the first move when it comes to having friends or asking ourselves "in" to play with other kids -- although for the very first time this year, Adam received two invitations from camp peers directly by telephone (not from parents). Imagine: the first time in his six years upon this earth. But I'm preaching to the choir on this blog. Many of you can imagine.

You should have seen the smile upon Adam's face when he got to communicate with his friends on the phone (even though speech is VERY difficult for him and was prompted by me). I don't mean that to sound accusative or pitiful. No! In fact, we were absolutely ecstatic. I use the example to show how things have been for many disabled individuals throughout history, and still, the way things are. Families like ours have to take the initiative, and we, in turn, feel we are imposing upon the favour of others. It's a very difficult dynamic, and I am committed to the positive evolution of diversity -- what that embodies -- and the relationships that grow from mutual effort. How can we learn from each other and what is it that we MUST learn?

We still have a lot of work to do to bridge the gap of understanding. To understand our thinking, here's an example from 1939:

"[Talcott] Parsons adopts a relativistic stance [in disability history thinking in 1939]: no matter how incapacitated one is by chronic illness or other impairment, one's social duties and obligations remain the same of the acutely ill. One must place oneself in the hands of medical professionals, follow their illness management regimens and seek to maximise health and capacity so that contributions to the functioning of the social system are made, in whatever way possible." (Carol Thomas, Theories and Traditions in Medical Sociology: Illness and Disability As Social Deviance, 2007.)


In other words, it is Adam's responsibility (and mine, it seems, as his parent) to "fix the problem," namely to "fix" or "cure" Adam, or at least to "make him better" [than he is]. That is, according to Parsons, our sole obligation. That was in 1939. Has it changed much today?

This is about our discomfort in being with disabled people (I include myself as one who needs to reflect on my own behaviour and response to disability). Yet, we are all just people in need of one another. We have to understand where our thinking about disability has come from as much as we have to ask about bias and prejudice towards any race or community! I ask myself this: Is the weight of being "normal" in order to participate or just be with others all on Adam, who already finds it difficult to be exactly like others, or do we as friends and family also reciprocate with our real love and desire to be with him the way he is, and perhaps to learn how he learns, how he views the world, and how he wants to be with us?

True reciprocity is molding ourselves to each other. We can begin by putting our children together in many different environments. Imagine what the world would look like in twenty years time if we do?

We have statistics which state that by including all students, we nurture a better society and all students perform better academically. Michael Berube a literary professor, who has done his research in his book Life As We Know It: A Father, A Family and an Exceptional Child writes:

"From what I've seen, very few of the political opponents to inclusion have done any real homework on the matter. The debate so far offers less evidence of the dumbing down of public education than of the dumbing down of right-wing cultural criticism..."

"...like the Patrick O'Hearn School in Boston, whose principal Bill Henderson, is both brilliant and blind, are proud to report that because of inclusion, their non-disabled students have not only become socially and psychologically mature but have registered better test scores in their 'traditional' areas (verbal and mathematical) as well."


As I wrote in my essay which is in the book Concepts of Normalcy: The Autistic and Typical Spectrum, written by Wendy Lawson and published this year, we actually have to show how non-disabled peers benefit from being with their disabled peers. It's onerous and unfair, but true at this point in time. Just as much as we are negating research that pathologizes autism and learning, we have to do the same in advancing inclusion.

Segregation, for all kinds of reasons, is dangerous. While we all want choices on where we want to go to school and the kinds of education available to us, we most definitely need to change our attitudes.

... after a year of full integration in a Saline, Michigan, school district, the percentage of teachers who agreed with the proposition that inclusion is unfair to 'regular' kids dropped from eighty to twelve, and that, as researcher Richard Schattman reports, several 'regular' teachers in inclusive schools find 'they already had children in their classes with more challenging academic, social and behavioral needs' than disabled kids assigned to their classrooms by inclusive policies....

...the statistic about teacher expectations is a telling one, since everyone knows that primary school education rests heavily on an economy of self-fulfilling prophecies: Children tend to do better when their teachers expect them to do better.."

"....Dickensian administrators and politicians... cut costs by eliminating special education and 'dumping' disabled children into regular classrooms without providing aides and therapists who can make inclusion meaningful." (Berube pp. 204-207).


Putting disabled and non-disabled populations together isn't a "dumbing down" of education as most people assume, and we have to work hard towards deconstructing those long-held myths. We also begin by scrutinizing every message we put out there about a disability:

- Is a disabled person speaking for themselves or is someone speaking "for" them? -- in our promotional videos, at an event for a centre, or school, on policy committees regarding inclusion, or disability and on school boards and at every community level?;

- If we are not doing the above, what myth about "incompetence" and disability does this send to a public that does not yet understand disability?

- How does that effect our work towards inclusion?

Disability isn't a dirty word like it used to be. Parents were once made to feel ashamed of having disabled children and those children, later turned adults, were treated like prisoners in institutions. Having an assistant or an aide in order to live life isn't a bad thing either. In fact, many "groups" of disabled people, be they from the Downs, Deaf, Cerebral Palsy, Autistic or whatever communities, have modeled disability "pride" after the gay pride movement in response to a society that finds disability to be "a bad or unfortunate state." I must say that I am especially proud of Adam. Not because he is "overcoming autism." I am simply proud of him as a person as would most parents be of any child. Every one of his accomplishments excites me beyond measure!! I am not ashamed of his label, although his label doesn't effectively describe him as a person in a world that doesn't understand the complexities of, and problems with, labels and how they relate to hierarchies of people, and thus lead to oppression of others.

"Autistic Pride," is a method in order that others understand how autistic and in fact, other disabled people are not granted the same rights and privileges as the rest of our society's members. That might be one measure we might use when responding to the needs of disabled individuals: would I have done that, or treated that person in that way, if the person was NOT disabled??

Adam may or may not need an assistant for the rest of his life, as do many other individuals. To build therapies in the name of "cost-reduction" by eradicating those assistants and special accommodations is very dangerous to him and other disabled individuals. Denying disability, in turn, usually done in order to find our own comfort zone with someone who is disabled by a kind of "reductionism of person" -- in other words, finding social dissonances or similarities -- can be another form of non acceptance. (Fred Davis, Deviance Disavowal: The Mismanagement Of Strained Interaction By the Visibly Handicapped, 1961)

Yet, in contrast, if you look at the attached article from the Harvard Business Review, some employers in our day are actually figuring out what autistic people have to offer, if only accommodated. Just imagine what this means if we all made such an effort? (See below)

Segregating education by regular, gifted and special enforces the myth that those classifications among humans are real -- that they fully describe people's ability to learn, or their intelligence levels. We all know that lines in the area of learning and intelligence always cross -- so say Deidre Lovecky and Mel Levine, Howard Gardener, among others.

Some disabled people demonstrate "gifted" tendencies in some areas, and "gifted" children may have issues when it comes to behaviour and anxiety -- and so another "label" is attached to them. Such classifications as "gifted," and those heightened expectations from parents and others that go along with that, often renders those students with documented psychological stress. I use these two examples because they, in the public psyche, demonstrate the myth of extremes between "special" and "gifted." By no means am I suggested that all people, no matter what fabric, are "gifted," but rather, to illustrate the great haze in understanding regarding the way people learn.

Guess also where investors invest their money? Which students are deemed the bright and shining hope for the future? No wonder the disabled are among some of the poorest in our society. We have not made space in our minds, hearts and classrooms, for children to participate and respond in ways in which they can.

Are we capable of imagining the alternatives? The possibilities?

Entrepreneur Thorkil Sonne on what you can learn from employees with autism

A Conversation with Thorkil Sonne by Susan Donovan (Harvard Business Review, September 2008.)


Four years ago Thorkil Sonne realized that his young autistic son possessed an extraordinary memory and a remarkable eye for detail. Those traits are prevalent among people with autism, and Sonne saw an opportunity to help individuals with the disorder find productive employment. As the technical director of a Danish software venture, he knew those qualities were critical in software testers. So he went out on his own and launched Specialisterne, a Copenhagen-based software-testing firm that now has 51 employees, including 37 with autism, and revenues of $2 million.

You started your company to improve the lives of people with autism. Why not just create a nonprofit focused on research or job training?

I wanted to do more than just provide a sheltered workplace for people with a disability. My goal is to create opportunities for people with autism on an international scale. You might find money to support sheltered working environments in Scandinavia but not in Poland or Spain or Brazil. To extend its reach, our organization needs the kind of funding that only a profit-making venture can generate. It must succeed on market terms.

Is it hard to reconcile two missions—serving customers and aiding people with a disability?

We’re constantly asked whether we support customers or a cause. We want to do both, of course, but we’re always fighting against the suspicion that we’re just a charity. Our corporate social responsibility profile might open doors with CEOs, but executives in charge of software testing aren’t evaluated on CSR, only on getting the most for the company’s money. To wipe away their suspicions, we must exceed performance expectations every time.

All our business comes from the private sector. Because Denmark has no tradition of social enterprises, the government doesn’t earmark contracts for companies like ours or give them tax breaks. We have to compete head on.

How does managing autistic workers differ from managing other people?


Most of our consultants with autism have a mild form called Asperger’s and are high functioning. Still, because they’re often hypersensitive to noise, they can be uncomfortable in open-concept office spaces without doors or walls. They also have trouble working in teams and understanding social cues, such as gestures, facial expressions, and tone of voice. You have to be precise and direct with them, be very specific about your expectations, and avoid sarcasm and nonverbal communication. Though we expect employees to do their jobs well, we don’t ask them to excel socially or to interact all the time with others. We just find them the right role. That takes tremendous stress off them. I think normality is whatever the majority decides it will be, and in our company people with autism are the norm.

----
"
I hope that article's closing lines doesn't feed into an "advocacy" movement that insists on maintaining hierarchies for political reasons. Adam is by no means with Aspergers, yet, like most autistic people, has much to offer if only given the opportunity. Perhaps a few non verbal autistic people in university (or not) can help us dispose of the myths of hierarchies and intelligence and contributions.

Of course, it takes work to make space in our imaginations in order to create such opportunities.

6 Comments:

Blogger laurentius rex said...

Here is Talcott Parsons apothegm in the flesh as it were in one of Dennis Potters plays,

http://www.youtube.com/watch?v=IDOe7Npinl4

Never was a fan of Talcott Parsons, oily US elitist Sociologist almost as bad as Schumpeter.

4:36 PM  
Blogger Amber DBTD said...

My concern, regarding my son's inclusive classroom, is this... What's the point of their inclusion, if by incluson they simply mean there is a mix of NT and Autistic kids in the classroom? They still only teach the NT kids. Jaymes just vegetates, they don't give him the one on one he needs, thus the inclusion is really doing nothing for him.

11:10 PM  
Blogger Estee Klar-Wolfond said...

You see, that's not inclusion and that's why we have to work harder to change attitudes. That would be called "mainstreaming," ie; throwing a disabled kid in a class and NOT accommodating their needs or acknowledging what is needed by them for the specific individual to succeed.

Molding ourselves to one another is reciprocal interaction. If it doesn't happen in the schools, it will never happen in society at large.

I hope you can push to make your school understand that inclusion means also support and accommodation. Read Paula Kluth's work and maybe you can help your school towards this end by giving them the resources to refer to which will enable them to further understand and to acquire "the tools."

1:36 PM  
Blogger Estee Klar-Wolfond said...

One more thing: Inclusion in a real sense of reciprocity does not put the onus on the person with the disability to become LIKE the other kids. It requires the entire organism to change, mold, support each other. The classroom, the school, are in effect, the "organism."

1:37 PM  
Blogger farmwifetwo said...

My youngest's school program so far has been inclusive. He does everything they do in his class with a twist if necessary and with full support. He has a WONDERFUL EA and Teacher this year and they have to keep up with him and his learning/growth not the other way around.

Eldest was mainstreamed.... if I hadn't homeschooled on top and put in private speech he would have been screwed. Now in Gr 4 he FINALLY has support. She comes 30min in the morning, after recesses, lunch and end of day to plan his life. OT is getting him a permanent computer. Psychometric testing was done and I will get the results this week even though he isn't 2yrs behind his peers - Child Psych requested and Mother demanded.

Never stop fighting the system. My not quite 7yr old is an included, active member of the class. Being an easy going child, non-destructive doesn't hurt, I admit, so others - children, teachers - are willing to help any way they can.

S

2:43 PM  
Blogger Amber DBTD said...

The problem is this.. Because he is free to do whatever he likes during the day, there is no need for them to mold to anything. he behaves well, because nothing is being asked of him, and thus in their eyes it is successful. I'd love to hear both Estee and Farmwife's opinions on my latest blog post. You both have a lot of useful knowledge and I value your opinions.

And Estee- should I be nervous, having had John Best (Foresam) post on my blog? The man kinda scares me!

11:53 AM  

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