I’m writing my thesis and am hankering to blog – so many things on my mind with the recent Ontario budget proposal, the ever-so teensy weensy allowance for an individual on ODSP to take home a couple hundred bucks a month and the way we may have to reconsider how we advocate for support as autistic families. Can I say at least it wasn’t cut altogether as was the original threat? Also in the budget is a brief mention of autism services and a reduction of wait-list times for those in urgent need. I’d like here to write a post for all of us to reconsider what all autistic people and families need, and how we have to lobby.
I’m writing my thesis on autism advocacy, in particular, among non-verbal populations. There are wonderful contributions to this already out there to be cited. Also, The Autism Acceptance Project (TAAP) is in meetings, where the autistic population is setting the agenda and I am a facilitator/organizer (also we hope to announce an upcoming event soon). I’ve thought long and hard about the work of autistic folks and re-evaluate my role as a partner and ally to Adam and others. The most fundamental concern I have that will effect all autistic people and their families is autistic rights – to be viewed as valuable citizens; this means that the “spectrum” concept of functioning does not preclude rights and that all people are equal and valuable. This is addressed in substantive equality, where differential treatment must be sought for many to achieve equality (Rioux, 1999). In other words, many disabled people require support and accommodation to participate in their chosen ways in society. What is particularly worrisome to me as a parent of an autistic child, is the lack of access and lack of education. Yet, I also see our traditional education system crumbling, which to me, provides a new opportunity to finally give access to education for everyone. This post proposes not only services to alleviate families, but many opportunities for autistic people of all ages.
Here, I see potential for those who are also ABA lobbyists (I will specifically mention this group since ABA is cited in all government literature now and as I predicted in 2005, it would be the only service available to autistics) to change their drumbeat from tragedy to substantive rights. I’ve cited recently the Jefferey Moore case in British Columbia (2012) wherein it was stated that the notion of remediation risked adverse effect discrimination. I would argue the same – that when we believe we have to remediate an autistic individual, or any individual with a learning disability, before allowing them access to school, or to an education, then this is a fundamental oppression and devaluation. ABA schools can consider integrating academics into their methods as well as any other therapies out there, thus supporting, enabling, respecting (instead of normalizing) autistic being. That Augmentative Assistive Communication (AAC) and other supported communication techniques is not considered a right to communication should be an outrage to us all. At one time, the Deaf community was not allowed to sign! Now, the same thing is happening to the non-verbal autism community. The most fundamental right is the right to access communication. Yet, teachers also have to learn how to support an autistic person to use them, while also considering the autistic learning style (there is research out there you can find easily on this). There are enough autistic independent typists as well as teaching methods available. I could go on — video monitors, white boards, computers – these are fundamental for autistic learning and we all have a wonderful opportunity to learn to support autistic individuals! My question to educators and supporters, how can we change the way we do things to support autistic rights?
Back to the the right to education – music, art, math, science, geography – all of these are fundamental to an individual’s quality of life. Adam is autistic and has a curious mind. When he is introduced to new topics, they may be hard at first if they are taught in traditional ways, but as he learns he becomes more interested, proud and excited; doors open and he wants to learn more! Should an autistic person in a Verbal Behaviour or ABA program be denied access to academic material when they have read the same word since they were a toddler? Or, can this new material be integrated within a program? How creative can we be?How can autistic children be allowed access to their own interests and material and how can teachers facilitate their continued learning of what interests them? These are also fundamental rights – the right to choose and to follow one’s own path. While it has been cited numerous times that everyone – disabled and not – can benefit from an individualized approach to education – it as also been deemed difficult in the traditional system where teachers have been the gatekeepers of knowledge.
I was turned on recently to Sal Kahn, who has created a series of educational videos on YouTube which are utilized by some classrooms. Some teachers are reconsidering their role as facilitators instead of lecturers at the front of the classroom, monitoring a child’s work on the computer using Kahn’s lessons, and then stepping in to help when needed. Online learning can be very effective for autistic individuals and must be considered if we are to enable a future of autistic participation and contribution. This provides fantastic opportunities where video learning and technology – such as Mindcraft – are enablers – autistic people can build in this program, make art and new worlds, and this can be a monitored learning program (and many do which attests to innate autistic intelligence and ability). Online friendships and self-advocacy, as reported by many non-verbal autistic individuals, have also enabled better socialization skills in virtual and real time. How can rethink such spaces that are already at our disposal? How can we allow for autistic work to take place also on autistic terms?
We have to reconsider these spaces from traditional ones to creative ones where all people can participate. At the moment, I can say that while I work to have Adam included, he is mostly segregated – goes to school, goes to a few programs with an aide worker which thankfully enables him to participate. Within the system at our disposal, we work with Adam’s team to provide him the best we can and we are all learning. But this is what I ask of all Canadian society – at least give Adam, and others, the opportunity to participate. To-date, he is not allowed. Even trying to get Adam into certain schools is fraught with traditional testing – not allowing him frequent pre-visits or adapting work in formats that he can best respond to. All I can say is, the world is losing out too for Adam can give back so much.
As I consider my daily life as Adam’s mother, and how my heart wrenches for him – I at least want him to have choices. This drives my work towards a more inclusive future (which may require specialized education in the real sense of education for his future – not sequestering, normalizing and presuming incompetence) for our children and for families to support this, this also traverses to the arena of advocacy with such questions as: What of my role as his parent and an “autism rights activist?” How can I, as a non-autistic person who is used to traditional hierarchical boards, committees and organization, become familiar with an alternative way of organization and allowing a new space, or room, for autistic self-advocates? How can autistic people enable us when some of us are listening? What about virtual spaces and how might they be maximized? How can we allow for dissent and debate that reflects true democracy and recognize that not all autistic people feel the same way, not all people require the same supports, and not everyone will agree? What must we recognize in ourselves as neurotypical teachers, parents, therapists, caregivers and charity organizers in stepping aside and lending a hand to create this space? In speaking of charity and it’s historical role of “handing out,” how can we build communities that support self-advocate needs? In one sense, I truly understand the need for autistic people to have this space, and predominant “voices,” if you will, but we also all have to recognize the important role of allies and parent supporters and educate families about the history of the autistic self-advocacy, and its fragility. We cannot afford to lose the ground gained by autistic-self advocates! Autistic people also have to allow for us to become political facilitators alongside autistic people without us more verbally loquacious dominating the agenda or “speaking over” autistics. Autistic people can teach us patience and learning to listen without speaking over. Let me ramble here by making another comment – research teams and funders have to recognize this urgent need for emancipatory research that requires much patience and time, and make allowances for it.
Here, I acknowledge the independence via interdependence model that I write a lot about – that we tend to advocate for complete autonomy and independence that drives our therapies and expectations for autistic people before giving them full value and citizenship. Yet when we truly look at how interdependent we all are – on our families, on technology, on a service system, none of us are independent. This is the area in which we need to discuss when we talk about autism services – not a cradle to grave service where we put autistic people away, but a collective economy of support where autistic people can also contribute and where we do not view responsibility as something tragic. I can only think that in North America this notion is strongest – when I lived in Europe, families often stayed in the same home all of their lives and supported one another. Part of me can’t help but think that this notion of supporting our children into adulthood is a construction of the industrial revolution – where children were sent into factories to work. As we see those structures crumbling, I hope we can reconsider that supporting one another should be something to be grateful for, not a tragedy. Will our quality of life not improve when we know that all of us who need more support at various points in our lifetimes, will also be respected, supported and not be made to feel guilty or less than for it?
Finally, I can think of all the “job creation,” for autistic people and support workers alike when I think of Ontario’s new proposed budget. Yet as long as we are wedded to this false notion of “independence,” we might continue to build cities which isolate everyone. For certain, this is the ultimate paradox – I think we all feel isolated in many concrete jungles, and we need a call to building collectives and communities which utilize and respect the varying contributions of all citizens. To respect human variation and possibility for re-building, I draw on Jennifer Sarrett’s Autistic Human Rights: A Proposal:
“[H]uman rights are to be enjoyed based on fundamental frailty and vulnerability inherent within the state of being human. By focusing on vulnerability, a state that all people experience at various points in life, disability and difference becomes an experience that can tie all humans together.” (2012, Disability Studies Quarterly, unpaginated)
Also, quoting Eva Kittay, Sarrett includes that while not all people are equally vulnerable, that is, some people are more vulnerable than others, it does not mean that the more vulnerable are less worthy or entitled to justice, equality and human rights:
This principle, in contrast to the others, would not be based on our equal vulnerability, nor on our possession of rationality, a sense of justice, and a vision of our own good. Instead, it would be based on our unequal vulnerability in dependency, on our moral power to respond to others in need, on on the primacy of human relations to happiness and well-being.” (Kittay in Sarrett, 2012)
Sarrett further states that,
“human rights do not have to rely on a single doctrine – dependence or fragility or oppression or humanness or capability. The autism-based model described here is built on a foundation of dependence, individuality, and valuing human diversity, allowing for the inclusion of the entire sphere [note: she uses ‘sphere’ instead of ‘spectrum’ which she considers ableist] of cognitive, intellectual, physical and psychiatric traits within the human condition. Accounting for and respecting variations in the human state are central to the ongoing and dynamic process of developing human rights models most effective for any time and place. Any model of human rights should be in constant conversation with contemporary issues of diversity, medicine, law, and advocacy. Thus, all models…should be subject to alterations and updates to ensure the most acute and powerful application in every community and for every person.”
She notes that while some positive rights have been granted for education and health care, that the autistic rights model, fashioned after civil rights, has difficulty with the promotion of negative rights which includes the right to assemble. Sarrett says that negative rights are integral to this inclusive model of human rights, but self-representation and advocacy can be difficult for many non-verbal advocates who have assembled more easily online, and find real-time meetings and interactions very difficult. This asks us to reconsider how accessible our boards, committees and systems and how they enact as barriers to many autistic people. How might we re-organize our organizations? I, for one, believe that the Internet provides the future possibilities for the democratic process.
Sarrett, Jennifer (2012). Autistic Human Rights: A Proposal. Disability Studies Quarterly. Vol. 32. No. 4.