We need to discuss problems with autism programs, our communities (including schools) and inclusion. There is continued segregation and fissure within the autism community over the notion of recovery and independence. Our Canadian Charter of Rights and Freedoms, Section 15, states:
Marginal note:Equality before and under law and equal protection and benefit of law
15. (1) Every individual is equal before and under the law and has the right to the equal protection and equal benefit of the law without discrimination and, in particular, without discrimination based on race, national or ethnic origin, colour, religion, sex, age or mental or physical disability.
Marginal note:Affirmative action programs
(2) Subsection (1) does not preclude any law, program or activity that has as its object the amelioration of conditions of disadvantaged individuals or groups including those that are disadvantaged because of race, national or ethnic origin, colour, religion, sex, age or mental or physical disability. (84)
It is, therefore, everyone’s duty to accommodate – equal rights means the right to be included. While Section 15 and other instruments exist and rights are stated, they are still not enacted. There are a lot of conditions for the participation in many programs, many of them made for the autistic population, and of course in our community-at-large. A recent court case cited this issue (Moore vs. British Columbia) whereby it was noted that remediation before the right to inclusion is not inclusion; this is in effect, discrimination. In fact, the term is adverse effect discrimination whereby the concept of remediation is a barrier to participation and inclusion. We can point to many autism services that segregate, punish, or attempt to normalize the autistic citizen as such. In Moore, this statement was made although not highlighted enough. The disability community must be involved in shaping the meaning of accommodation, and they are missing from the discourse in cases like Moore v. British Columbia, 2012. In short, remediation is not accommodation; the former can be viewed as a disciplinary term and the latter must be created in accompaniment with disabled people to enable disabled people. The case of Moore can be scrutinized in more depth regarding the ontological constructions in policy and law that continue to exclude people with disabilities in the school system and in other programs.
Problematic is our notion of independence as a criteria for participation and enabled (or supported) participation in the community. As a result, many autism programs, and of course universities and schools, maintain this barrier to participation. It happens when human assistants (appointed and/or approved by the autistic person) are not allowed to accompany autistic citizens; when children are segregated into autism classrooms; and when many folks who have significant challenges are not provided access under the assumption that they are not able because they are in need of support. Such assistance is akin to the deaf requiring an interpreter, however, our notions and associations around independence remain the foundation under which exclusion still occurs; such notions require our demolition. These conditions to participation are neither accommodation nor equality. This is also supported by Rioux and Frazee:
“Equality under s. 15 entails much more than simply ‘accommodating’ persons with disabilities into existing societal norms and structures leaving unscrutinized those norms and structures themselves. Substantive equality challenges the very existence of mainstream structural and institutional barriers, including the socially constructed notions of disability which inform them. For persons with disabilities, equality means the right to participate in an inclusive society. It does not mean the right to participate in mainstream society through the adoption of non-disabled norms.” (Rioux and Frazee, 1999).
If you attended the talks and film screenings in Toronto with the film’s subjects Larry and Tracy (Wretches & Jabberers) – autistic people who type to communicate and require assistance – it becomes clear(er) that most autistic individuals who are given access to assistance and communication devices with support can participate. It also becomes clear the levels of injustice that take place everyday for citizens who struggle with speech and physical differences. However, most of our therapies are built to make the individual as independent or non-autistic as possible. We require a standard (and law) by which service and assistance supports the rights of the autistic agent to be included. We know that many people will never “measure up” (as we like to think that they can be normalized through isolating intensive interventions) to become fully independent, but can enjoy life and participate given opportunity and access. By segregating autistic people and putting these conditions on their participation, we as a Canadian society are devaluing the autistic citizen.
We will be discussing ways and means to address this barrier, and call into question organizations (many of them autism organizations themselves who claim to provide services that are funded by the public purse) who provide a qualified inclusion – to those people whose bodies appear and behave as “normal” as possible. There will be thousands of autistic Canadians who will, as such, never achieve the quality of life that the Charter states, is their entitlement.
For further consideration and discussion, please view this video with Yvonne Peters, Gwen Brodsky, Ravi Malhotra who Discuss Inclusion After the Moore Case. This video provides some legal context for this discussion:
Rioux, Marcia H. and Frazee, Catherine. (1999). The Canadian Framework for Disability Equality Rights in Melinda Jones & Lee Ann Basser Marks, et al., eds. Disability, Divers-Ability and Legal Change, Kluwer Law International. p. 89.
Adam is typing a deluge of sentences, feelings, anger at being ignored by certain people; upset by some people in his life that still do not “see his mind,” as he puts it. As Adam’s parent and protector, I know there is good reason to share our journey and good reason to protect Adam’s growth by not sharing too much. I am cognizant of his consent so I will make hints and speak generally.
We all know that there are people who like to doubt and target the autistic child or adult. Adam has a cadre of supporters around him as he is learning to assert his rights and self-advocate now as a more fluent typist. The flood gates are opening and hopefully the people in his life will pay attention. Despite his prolific writing, there are many who don’t.
I was disappointed to read that an autism school, after having seen the movie Wretches & Jabberers, ream off reasons why it is so necessary for autistic people to become independent. We have a huge problem as we still cite autism as a problem in our society (mostly because of a lack of independence) and this makes it hard for many to live good lives. A blog post is not enough space to qualify what makes a good life, or how the notion of freedom and individualism is also a part of the disability rights movement itself. I will just go on briefly about the state we are in without those qualifications.
Instead of talking about rights to access, inclusion and support, our communities continue to discuss ways to make people independent before the right to inclusion and participation in society. There is a major flaw with this premise in that for most, this will result in permanent exclusion and segregation into special schools and disability centres. One method to reverse this may be to make it mandatory for acceptance and support to enable the right to be included, but of course we need a value system to buttress this. Until we understand how autistic people can be enabled, and how they wish to be supported, we usually set the stage for an inequitable and unjust relationships whereby the people who “teach” autistic people put themselves in a superior role of remediator (therapist, teacher, etc). This means that we believe that the normal body and behaviour is considered the “right” way to be in society.
We have to understand the necessity of support before we go further, and seek counsel from autistic people in how they wish to be supported.This happens in our everyday interactions, as every behaviour is a mode of communication. Good support that is grounded in understanding rights, the theory behind that, and more pointedly, the movement differences of many folks with disabilities helps us to understand the need for support (there are more points to be made but I just wrote these to be a starting point for discussion). However, we also have to remember that the supports are not universal because there is no monolithic autism. It is this tension about competing needs in the service industry that makes this complicated. Not every autistic person requires the same support, but everyone does require the same access and rights. Rights requires a more detailed discussion too, but again, I am writing from a basic premise that our rights in society are established even though they not always acknowledged or enacted.
Sometimes support can enable people to become independent. Other times, it can enable that much more independence than before, but not absolute independence. Of course, this is a fractured notion since none of us are independent. We can think of a myriad of examples of how we are all connected despite our heralded idea of individualism and the notion of freedom associated with this. By way of philosopher Charles Taylor, I quite agree that our modern notions individualism and freedom are tied in with instrumental reason, that is, a means to an end. In ordinary terms that relate to autism and independence, this means that the heralded modern ideal makes it incumbent to be independent to be included and to work (the means, to be independent, becomes the end, a person who costs less and is efficient to producing goods in a market economy as it is today). As such, the ideal is exclusive and does not work for the majority of autistic people. What we will have left after the misguided premise will be more need for adult services which continue to segregate and have done nothing to enable communication, choice, and participation.
The film Wretches & Jabbererscertainly promotes the idea of the independent mind – but that mind is enabled by support. It refutes the assumption that a cogent mind and a fluent body must co-exist. We learn that the body will often not do what the mind is thinking, and that the body also has its own unique ways of knowing through movements we call “inappropriate” (the term “inappropriate behaviour” should be reserved for people who inflict ill will to another). Without support, many autistic people who have movement difficulties, inability to speak, and other difficulties, would never gain access to any communication whatsoever. In turn, it is equally unjust to take an autistic person’s voice away when a therapist or a support worker wishes to be successful in helping the autistic person to the point that it enables the therapist’s own career. For example, in many therapeutic settings, a therapist will do certain things to over prompt the autistic person to gain a positive outcome or may falsify data results. This happens with supported communication just has much as it happens in ABA and with other methods. A “best practice” seems to me to take all of the above into account to ensure that the checks and balances are there to test the support worker more than the autistic person – which requires a rights-based approach.
Supported communication’s time has come as more and more autistic children gain access with support and later do become independent. Maybe this is more so than in the 1990′s because many have matured from childhood to become regular and mostly independent (through typing) communicators.(For the time being I am not going into the problems of a positivist to this). It is this burden of proof, incumbent on the autistic body, that has sadly been necessary as a result of a doubting public on the intelligence of individuals who cannot speak, or who make “inarticulate” sounds and effusive bodily movements. However, let us not withdraw support for those who require the assistant or aide worker to contribute, work and communicate. For many, this interdependency will be vital to life. In this sense, plenty of proofs (as quoted from the film) are not enough. We need a proof of commitment from every person in society; we need the proof that autistic rights/disability rights mean something in Canada. We need to be able to enforce those rights.
So this obviously, I hope, points to something I think we all need to discuss: ourselves. What is it about society that keeps autistic people from participating as autistic people? What assumptions do we make about disability and belonging and why is most of it lip service and not action? What is a rights based approach to helping autistic people? Why are we avoiding helping people to use devices?
One thing I have learned is that we learn to include by including. Adam is severely autistic and intelligent and has so much he wants to offer. He has friends. He complains about being ignored by some people who likely assume that he doesn’t understand. These complaints suggest something very wrong with our assumptions that despite the work of autistic people for us to hear and see them, continue to be ignored. Why? What more proof do we need?
Now I come to the who benefits question. I’ve written about this before, as have many writers and theorists. Perhaps we have to take a look at the industry we have created from the vulnerabilities of others. Who is getting paid? Who is getting attention or even celebrity in the autism world and why? I’m fed up with an expert culture feeding upon parent’s imaginations and pocket books. As I see and do in our own autism lives here in Toronto, education and access can work. We are living and breathing examples of it. But ours is a hard-work story. It’s not a cure story, and not one that feeds into celebrity culture.
Every day I work to figure out why and who this can be made accessible to the many families who are in need of support, but either are drained financially or must be subservient to a program that they must take or get nothing else. You may think at this point that it costs too much. Indeed, that’s the economic cost to society argument that comes at a great cost to many. It is inhumane. The great cost is continue to promote a method of therapy fueled by an attitude that continues to segregate. We tend to concur with an argument that abuse perpetrated by aide workers happens because of economic reasons – that the worker is being paid too little. I realize this could be a topic of its own, but I can’t resist inserting it here. How can we accept this low standard for disabled people? We would not accept this for children, but over and over again we hear it happens to disabled people and write off the story instead of talking about our collective ethical responsibility to improve our attitudes and values towards the disabled in our society. And this needs to happen among people who are not touched by disability as much as within disabled families. The only way we can make it happen is together. The only way we can improve our lives is to change the way we discuss autism and society.
I would love to have a voice loud enough to make a call to all schools and autism organizations, parents and autistic people, to include these discussions in the autism agenda; perhaps I can only hope some people will take what they need from this and many other posts written by autistic people. We need to come together to create this collective voice! Very often these policy documents are centred around therapy and services. Ethics, value, inclusion are sidelined by discussions about how to make the autistic person independent through therapy. I believe that a person-centred approach could be focussed more on these autistic rights and ethics discussions. The question is, why hasn’t it?
Rights is not necessarily (and most definitely not exclusively) about the right to therapy but the right to be autistic and included. In the meantime, since these rights are established (although not acknowledged for autistic people in Canada as we can see by our public institutions) we must do everything to provide access to communication tools beyond a PECS system. Autistic people are intelligent and the spectrum notion is highly misguided in terms of our understanding of people, yet it satisfies the need for a quick summary of autistic people for non-autistic people. We must also urge people to rid the notion that the autistic person will miraculously one day type clear thoughts or speak – it is unfair for the autistic people and supporters who toil to communicate. This is not to say that an autistic person will not come to speech later in life. Indeed Adam can talk the more he types but talking is different than typing. You can read up on that yourself. Not all autistic people will ever be able to talk even though they will be able to type (notice my assertion).
As many will attest who have learned to type, it’s a long and arduous process for both the typist and the supporter. Adam is now 12 and is just beginning to really express complicated things. We’ve been at it since he was 4, and we still have a ways to go. This is the kind of patience, perseverance and belief that all of us require to support the autistic person into adulthood. I know that Adam will go on in his education, so long as we can fight for the right for him to be classroom at either college or university. As Adam grows and learns now that he is out of autism classrooms, I can say safely that it’s not a matter of if, it’s a matter of when. This is also the case for his speaking up to the people in his life and about his own experiences as a person who has had to live with this autism label and all that it comes with. I am not underestimating the ongoing challenges that he will have to contend with, and how I will have to support him in this. I am often enraged by our culture that perpetuates despair for families instead of supporting them in making all of our “autistic lives” good and contented ones.
It takes a fight to avoid the pull of “experts” who will insist that your child has the “intelligence of a 5 year old,” or from the doctor who, after an 18 second observation will tell you that your child’s tics require psychotropic medication (the list goes on). For certain, every person’s situation is different and will require different supports, but the point is that too often we let the medical profession and the medicalized therapeutic professions do this to us and we all need more empowerment and support to critically think about what it is that prevents our children from being in a classroom to being out in the community with all kinds of people – not just fellow autistic ones. It is better to find someone who will spend time and listen with us, start with conservative approaches, and of course, put the rights of the child first. We must find each other for support along the way.
While I get fed up with the barrage of public opinion (indeed another flaw of modern culture that insists that individualism is associated with this free opinion) that suggest that independence is of utmost importance and the underlying prejudice (and thus barrier) that exists within that statement, I think that we have a lot more work to do. Sometimes we have to be brave in this and say it like it is.
I’ve been sitting back and watching. While not all things are perfect, I have to recall what it was like in Ontario 12 years ago when I was first introduced to this social phenomenon called autism. CNN had numerous reports on the “epidemic” of autism; the MMR vaccine was blamed; there were numerous reports of questionable remedies that put autistic children in harms way; there were hate blogs written about autistic people and parents who wanted to love and support their children. The blogesphere was not yet syndicated and contained burgeoning home-made blogs by people labeled with autism and we learned a lot from autistics who wrote them – about activism, identity, the right to be who we are in every neurological way. Indeed, neurology is a term of the times which has redefined difference (neurodiversity). Although this is critiqued by many of those belonging to the disabled community as the new normalizing term (Lennard Davis, The End of Normal: Identity in a Biocultural Era, 2013) thereby losing its utility, I suppose I belong to a group who believes that we might not have gotten to this place of questioning, and beyond an institutional disabled identity (i.e. segregated and isolated), without this renaming and reconceptualization. To further highlight Davis’ important question:
“If we are now living in an identity-culture eshatron in which people are asking whether we are ‘beyond identity,’ then could this development be related in some significant way to the demise of the concept of ‘normality? Is it possible that normal, in its largest sense, which has done such heavy lifting in the area of eugenics, scientific racism, ableism, gender bias, homophobia, and so on, is playing itself out and losing its utility as a driving force in culture in general and academic culture in particular? And if normal is being decommissioned as a discursive organizer, what replaces it?’” (Davis, 1).
Davis argues that diversity has become the new normal.He also makes an important point that there are some people who do not have a choice of identity, which, in my words, may dampen the concept of diversity for our community. In particular, disabled identities are not chosen. Perhaps we now have to think beyond identity and challenge the concepts of acceptance and community in a world where these lines are always expanding and contracting.
That said, I remember what my introduction was to autism. Mothers and fathers before me remember institutionalization. Parents advocate for a world where autistic children are accepted, even if in a neoliberal paradigm (in other words, while we can see its shortcomings, we still do many unpleasant things to survive). It seems the “strengths” of autism at least are earning a place at the employment line, which then perhaps allows our children to get an education and better services. Perhaps our kids will be understood for their sensory, communication and social issues and not be reprimanded or judged for them. All these seem like good things. I would like to imagine a world where we never forget – where many of the younger generation of ABA therapists and teachers have no recollection of “different” kids in their neighborhood suddenly disappearing. There is work to be done to educate people working in the field on the history of disability and institutionalization and how close we always seem to be to doing that again. Must we continue to ask why this is happening despite the advocacy for autism acceptance?
And finally, in Davis’ words:
“There is a built-in contradiction to the idea of diversity in neoliberal ideology, which holds first and foremost each person to be a unique individual. Individualism does no meld easily into the idea of group identity. And yet for neoliberalism it is a must. In a diverse world, one must be part of a ‘different’ group – ethnic, gendered, raced, sexual. It is considered boring if not limiting, under the diversity aegis, to be part of the nondiverse (usually dominant) group. So diversity demands difference so it can claim sameness. In effect, the paradoxical logic is: we are all different; therefore we are all the same.
The problem with diversity is that it really needs two things in order to survive as a concept. It needs to imagine a utopia in which difference will disappear, while living in a present that is obsessed with difference. And it needs to suppress everything that confounds that vision. What is suppressed from the imaginary of diversity, a suppression that actually puts neoliberal diversity into play, are various forms of inequality, notably economic inequality, as the question of power. The power and wealth difference is nowhere to be found in this neoliberal view of diversity….Ultimately what I am arguing is that disability is an identity that is unlike all the others in that it resists change and cure…disability is the ultimate modifier of identity, holding identity to its original meaning of being one with oneself. Which after all is the foundation of difference.” (Davis, 13-14).
While I acknowledge Davis, I find myself thrust into an acceptance paradigm that allows Adam to be in a classroom and in the community, however imperfect (requiring time, exhaustive and emotional effort, Adam’s emotional effort and his ‘trooper’ ability among it all) – and all of this based on proof of competence and ability as he counts money so fast that the adults in the room have to check to see if he’s right (he is). I think it is great if we can enable others to see autism as a way of being in the world – sensory difference as not behavioral belligerence; non-verbal disability as not an unwillingness to speak or non-intelligence. To go on: not looking at someone when they are speaking doesn’t mean that the autistic person doesn’t understand what is being said; not wanting or able to be social should not be isolating or a reason to segregate nor a reason to push one to be social just like everyone else. (So what I’m saying is that as activists and/or advocates, we are still at this place). There are still so many misunderstandings in a moment with an autistic person, and one hopes that this marketing will help. I mean, we all have to survive, right? Adam’s survival is no different than mine except that he is at a clear disadvantage despite “neurodiversity.”
While recent autism advocacy is far better than I can remember 12 years ago, it remains services and employment based (and I am not at all suggesting we don’t need to do this important work to discuss services and accommodations past the age of 21…but we need to discuss this also in a much larger context). A discussion of the inequalities about which Davis and others speak must also be a topic to discuss the bigger picture of what we mean when we talk about inequality. Another part of this discussion might be to discuss all the the proofs that an autistic person has to demonstrate before earning a place at the school desk and in the boardroom – and a discussion why these suggest human value. These may not acquire the immediate services that people need but they are important to our evolution. We can do this while continuing to mine the various meanings of purpose.
I think many parents will agree that one of the most challenging things for families with autistic children are outings. Adam’s anxiety and repetitive activities increase over his perceived threats and fear of change; he will need to check out the bathroom in every restaurant; know where every door leads. This of course makes outings difficult, and it has a lot to do with impulse. At this point in our lives, Adam has been exceptionally tense – and I want to add that this coincides with his development, awareness and abilities too. This is a really important point to make up front in order not to treat behaviors by redirecting them in meaningless ways (such as touching your nose to replace a hair-raising scream…this will just piss Adam off). One of the dangers with partially-verbal of non-verbal people, as we know, is that when behaviors start, there is a propensity to exclude or treat the autistic person as if they are not aware of what they need, or what they are doing.
This is where adaptive communication has become very helpful for us since November. Adam has been typing for many years, but most ABA schools will not support supported typing – this is so problematic for folks with movement issues which Adam expresses – Tourettes tics, seizure-like episodes (and seizures are much more complex than one initially thinks), and “stuckness” which is catatonia. These are some of the reasons for speech impairments in many folks – similar to aphasia. It’s not that they don’t think or understand or even “hear”what we say but rather the word-finding and expressive capabilities through speech are not available. However with typing, Adam becomes more fluent in his speech. With support, he becomes, eventually, a more independent typist. In the meantime, he writes, “my body is like an engine that doesn’t run continually,”and despite that he can type some things independently he has asked for our support. To not give it to him is seen by many as immoral…something to think about in terms of our own learning in how to support people to communicate in order to hopefully become more fluent and independent. (While I have issues with this latter notion as a neo-liberal concept, I acknowledge we are swimming against a tide here and in order to survive, Adam has to work hard to prove himself…something else to think about in terms of how we treat the disabled).
So, to go out when a person has frequent anxious or bolting episodes (the fight/flight response as we know it), now requires perseverance, patience and planning, and a respect for Adam’s ability to participate in his daily planning. It also requires our time in letting him assemble himself if he begins to meltdown. For example, while on our March Break at the beach, Adam needed to go the bathroom. If there is a loud hand-drying in the bathroom, he will become anxious and turn right around. This anxiety lingered after the visit, and he began to flop his body on the beach. I told him to keep walking and tried to distract him, but at this point, it wasn’t working. I asked Adam to sit down until he was ready again to walk. As we did, we began to feed the birds. This made Adam happy and then able, after 20 minutes, to walk again.
Similarly, a week before on the same beach boardwalk, something triggered Adam and he wanted to urgently turn around. I could not understand what Adam wanted or needed so I asked him to sit down and type with me. This was difficult and he wanted to get up and bolt. I said he could not get up until we knew what he wanted. As he began to type, he was able to say what he wanted faster -”hot air balloon.” At that point, I realized that there was a water tower that looked like a hot-air balloon far down the beach, however, I miscalculated just how far. As we began to walk, it was occurring to me that we wouldn’t get there on foot. But Adam was so happy and relieved to be understood, and skipped merrily alongside his grandfather and I. I began to say to Adam that I didn’t think we would get there on foot, so at this point I was able to negotiate with him that we would go to dinner first and then drive by the “hot-air balloon.” Adam was able to have a nice dinner and also get to see his hot-air balloon on the drive home.
Today, my team are helping Adam on his outings with lots of preparation and photos and are working with me to practice outings with Adam in many places so Adam himself can feel more competent and less anxious. Every day while we were away, I insisted on taking Adam out, with someone with me for safety, because I fear that isolation is deadly. This is where mall therapy begins but also has to end – so often, we only see autistic kids in places where therapists feels safe, and this sadly restricts the lives of many autistic folks. Some parents might be afraid to be stared at in public. This is when it’s better to have a card to hand out to people indicating that your child is autistic and you are working on outings. Or, if someone is exceptionally helpful, as I’ve experienced lately, send a thank you note if you can to support inclusion. While we may begin with mall therapy, we must move on quickly. As I was preparing Adam to see the animals today in the park, he typed, “seeing animals is getting very tiring,”and he asked to walk and take the subway instead. This part of negotiation is also key to success for outings as people like Adam have a hard time advocating for themselves (although they do communicate with their behavior, which is largely viewed as maladaptive, sadly). I also have asked Adam how to support him in moments of need or meltdown where he wrote, “please be calm…” and indicated that these moments are also very embarrassing for him. In addition to a bag of tools he has to help himself and cognitive behavioral therapy (which, by the way, is typically used on people who are verbal and are deemed “high functioning”‘… Adam’s ability to learn the concepts and techniques quickly rules out theories on HFA and verbal ability and the ruling out of such therapy for non-verbal people…I hope a researcher who presents at IMFAR will pick up on this as most of the people used in research study tend to be from the HFA/verbal group due to cost and time constraints…something to think about in terms of who we service, who we value, and how we treat autistic people).
So the question is whether the mall is used to simply used to truly help autistic people be included in the world, a step towards many outings and environments, or if it excludes people from being in the world. Yes, it’s a challenge for folks, and in the end, a person decides for themselves where they want to be. But if Adam doesn’t learn now as well as being able to advocate his choices while learning to negotiate with others, our lives will remain behind closed doors. While I know this is hard for Adam, I also know that he doesn’t want this.
There are times when you have to just stop everything. Adam has required it…his school has required it. A focus on Adam’s typing and adaptations in school have alas been paying him dividends. Despite his want for escape, screaming and bolting, Adam has been in cognitive behavioural therapy and we’ve been working on his accommodations in school so much so, he is literally whipping through his academics – I know this is the tip of the proverbial iceberg. Sensory breaks every 20 minutes enable Adam to focus and he has an array of self-help tools he can now choose for himself to calm – from stretchy therabands (his fave), to signals that he can verbalize “the body needs to move.” His penchant for routine and doors is akin to panic attacks. It is important to give Adam concrete options to move from one thing to the next. His will is strong as is his intelligence and everyone who knows Adam must try to help him by staying two steps ahead of him at all times in order to respond. Or, as I do now, I also ask him what he needs:
Me: Adam, what I can do to help you around when you have the impulse to go through doors?
Adam: You can help by staying calm.
Me: What do you need?
Adam: Hard to move forward. Really hard to tell.
So we will work on it and Adam is beginning to communicate his more complex needs. Here in Florida (for Adam’s March Break), the building security guard came by and noted when he saw Adam in a moment going through doors with his “help,” he could recognize it as a panic attack right away because as a young person he too had panic attacks. This is what is like for Adam when it’s happening. For now, I ask him to sit down and try hard to get him to focus by typing. When he is able to think and redirect his thoughts to communicate, we can better negotiate our next steps. It takes time, so when we have an agenda, it just won’t work. We need to be prepared to spend an extra 20 or 30 minutes helping Adam to the next step because he could be literally “stuck” in his loop/OCD and tics, or needs that long to get his words out. But when he does, it’s so glorious to see him gleam with pride. It’s so wonderful to be able to negotiate now with my son! Our days are more rigid than they used to be; Adam needs his routine. And I am finding the balance, and keep asking him for knowledge on how to help him. It’s a team effort.
And as for that building security guard? Well, not everything has stopped…I began the thank you-note project – a new form of advocacy for Adam and autism. Every time someone helps in a positive way – by standing back and letting us be, to a nice gesture or comment, and letting us be a part of the community despite challenges, they receive a thank you note from Adam and I. People need to know they are doing the right thing by letting us be a part of our communities and advocating for what we need. It may not be a big glitzy campaign, but it’s something that we feel good about… reaching one person at a time.
There are days when I feel so grateful for the support Adam and I receive from the team, friends and family. My university is so supportive of our needs as well, allowing me a leave so I can lesson-plan for Adam and train him more in language and typing. With support since he was around five years old, Adam is now somewhat independent when conversations are not that open-ended and unclear. I can hand him a keyboard anytime and he can type his feelings or what he needs sometimes faster than he can speak the words. I also learned that animating words makes them meaningful and is better than rote vocabulary instruction.
Adam, as a hyperlexic individual since we could hear him speak at 11 months of age, loves letters and words. I am going to work with my son’s strengths. In so doing, I am training others in the process. Others watch how I do this with Adam and also learn to do it with him. I have no formal training other than personal study and my PhD work which focuses on semiotics and language and disability. This is my passion because of my son.
Adam is heading into puberty and has issues with anxiety, but seems most frustrated at not being able to say what he wants to say. When he gets the words out, he says them forcefully, looking into my eyes and saying the phrases again and again until I say it back. He knows I’ve understood him. I think it’s the way he’s been treated all of his life by us jabberers (dominant ordinary language users) in that we tend to repeat ourselves to autistic people who have trouble with ordinary language because we think they don’t understand us. Adam is doing what we have been doing to him. When I say the words back, echo him, he is satisfied that his message is understood. Phrases like, “I can’t wait anymore!” can be met by me with an acknowledgement and a timer which settles his need to know how much longer he must wait for his desired activity or item.
Also, operation calm down has worked. Adam is happier, the screaming tics abated. Following the stress and episode, Adam always emerges with more sentences (communication). I’ve yet to hear anything from the neurologists on it, but we keep trying just in case. This is not to “cure” the autism as much as it is to ensure that Adam’s health is attended to well; that we are not missing something. The health of the autistic person must be attended to as much as the non-disabled person. (Another topic about how to regard the autistic person might be better sought from autistic people themselves).
It was as if Adam was saying “please listen to me!” and we have. Some of it was because he didn’t enjoy a transition and the team and I will be working on this all year. That said, Adam is fairly flexible all things considered. We haul him on our travels, and I plan on taking him on many no matter what. I believe in respecting his difference and limitations while also helping him through without pushing too hard some days and knowing when to push because those days are so apparent. He loves to be with other people and to see new things. He loves being out in the world and engaged. It’s in the manner we engage him that is important to expand his horizons. I want to thank my university for supporting us in making this the best year for Adam and I. Without the understanding of schools and universities, we might never be able to do this important work that does effect so many people with disabilities in that not every year can be a consistent, machine-like operation. Sometimes we need to step back and focus on our children, or our own disabilities. I am overwhelmed by my school’s support. Thank you York University! I look forward to sharing my copious notes and experiences from the journey this year.
As for Adam this year, my mantra has nothing to do with compliance. It is about cooperation, engagement, respect, “muchness,” connection and yes, joy. Adam’s learning can’t happen without these principles.
It’s the end of the term…I need a long break and so does Adam. His anxiety went up as soon as the clocks turned back. The darkness brought about a new mood, Adam’s ticking went off the charts and he started a new tick – a screaming tick. He wasn’t happy – he couldn’t stop it as the pressure mounted on him to stop. I felt pressure in trying to help him, because let’s face it, screaming disturbs the peace. It’s alarming. With it, Adam’s flight-fight prompts him to bolt when he sees pathways and stairwells. These are all the signs that Operation Calm Down had to be put into effect. By virtue of naming it so, it’s not the first time we have implemented it.
Dad took Adam on a short vacation and this allowed me to have one too. On my yoga vacay, I met another dad with an Asperger’s son. He too mentioned that his son ticks and these anxiety attacks, let’s call them for now, make it difficult to get back to schoolwork. His son’s grades are going down, he said. So too, autistic autobiography reiterates the length of time it requires to self-regulate…sometimes days. Although I’ve been busy with PhD study, I realize the patterns of Adam’s distress tends to be at regular intervals during the year, and after sickness. Now that his body is changing as well as his needs, I am considering a leave-of-absence to help him, but also to help myself in so doing.
In thinking of Adam’s life and the very complex anxiety he has, his motor-planning difficulties, his frustration so apparent as he tries so hard to talk (the other day he got so frustrated, he picked up a pencil and in his chicken scratch wrote that he wanted to go to “gramma’s house”), we can’t always expect a learner like Adam to spend day-after-day exactly the same. The seasons change, there are new anxieties in life and we all need breaks. This is one of the most fundamental obstacle I can think of in how we teach children in general – in chairs for too long, in small rooms, with little outdoor exercise because of liability issues. It’s not one person’s fault, per se. It’s how we’ve built our society. We live in cars, in buildings and we don’t get out much. If Adam had an outdoor learning environment as a major part of his learning experience, I think he would be able to take in much more (outdoor education is decreasing but can be made accessible to people with disabilities). In the summer with lots of activity, for instance, he can talk more – and this is a feat for someone like Adam.
It is therefore very difficult to be talking grades, assessments, intelligence and so forth without recognizing that, living in the settings that are the way they are, that my autistic son will be delayed in his learning. The focus is far to much on intelligence (or ideas about intelligence) rather than somatic knowledge, difficulty and other ways that we can learn. I know this because when Adam is “on,” and there are adaptations to his learning, he can learn. I am writing in these terms because when looking at sites or articles about autism, the terms and ways of thinking about intelligence and learning are so “matter-of-fact” or normalized that we forget about how other kinds of learning can take place. This makes so many people, the forgotten ones. In essence, I’m trying to move away from a linear model of development and learning which doesn’t work for many people.
When the body has to spend so much time readjusting and becoming comfortable, the rest of the school work (at a desk in a chair…) has to be put aside. It would be wonderful for schools and educators to think about this a little more – to integrate movement into every aspect of the day including field trips and outdoor activities – even in inclement weather (my parents never protected me from it). I fear with our autistic children in Canada, that we are growing more back towards re-institutionalization in a different costume; we segregate and we isolate in order for our kids to be “safe.” In this, I appreciated mother and author of the book Spark, on her autistic son, namely, her “philosophy of muchness.” Never stop exposing (even with ticks, flaps and screaming) autistic children from many things – theatre, music, the outdoors, and accept the difficulties and make room for them.
We need to change the way we look at the length of education – since not all bodies cannot finish high school by the age of 18 (or 21). What other modes of education might we employ? Considering this is not as much an “intelligence” issue (I hesitate because I do not like to promote intellectualism which I find further separates people) as much as a somatic one.
Which leads me to some new revelations for me as a mom: that Adam’s “voice” is a part of his growth. It’s hard on me to watch him in a kind of pain from which he can’t escape (sometimes the ticks are a loop he can’t stop and sometimes they are willful – one “behaviour” can serve many different purposes) but also, I want so badly to give him the tools he needs so he can gain some latitude in his life. His life is so restricted with people always watching his every move – and this is, as I mentioned, for safety reasons. I often wonder, if given a great expanse of land to explore, could he feel better? What will his choices be for how he needs and wants to live his life? How can we support that? How do we stop protecting (or at least let up a little) in a dangerous world? I am certain some of Adam’s stress comes from having very little autonomy, and although he is strong and willful (which I believe will bode him well), if you can’t communicate fluently in our society, or you can’t cross the street by yourself, your autonomy is limited. This, of course, is where the concept of supported-decision making and assistance comes in, but assistants (and parents) really need to understand this and how to be good listeners (for some reading, look to Val Williams’ conversational analyses between caregivers and non-verbal individuals). Think of the life-skills training in addition to the education that our children also deserve. This takes more time than the allotment prescribed during the Industrial Revolution. I mean, it’s time to move on.
Then there is the need to reconsider how we look at behaviour from the outside. This is a problematic approach because we cannot know how Adam feels on the inside, yet we have lots of autistic autobiography to help us. When we tried redirecting Adam with a behavioural approach, this enraged him – he smashed himself into the couch and crumpled the paper from his Zeotrope in his little fists and threw them to the ground. The basis of this was to get Adam to stop screaming, but it did not account for the fact that he perhaps could not stop. This is the same for Tourettes (which I think Adam “has”) in that if you call more attention to the action, it will increase it. Instead, deflecting to relaxing activities seems to help more in addition to the sensory (deep pressure) that Adam needs.
An and calming approach worked much better than a behavioural one – this is what has to be done before we can teach any lessons – social and academic. Social stories and cognitive behavioural training are now a part of Adam’s week in addition to us seeking more adventure for him – rock climbing, circus arts and swimming. For CBT, another boy character is inserted into social stories to take the attention away from Adam. This way, Adam can relate to the character without feeling targeted. I gleaned this from reading Donna Williams’ Exposure Anxiety, which makes a lot of sense where Adam is concerned.
I fully believe after 12 years of being with Adam that seeking cooperation through engagement is our obligation, not his because he is still learning. He is a child who wants to learn, but we can’t do that by mere compliance. He complies when he is respected and engaged and also knows the rules (teaching boundaries respectfully will be our new challenge). I’ve started teaching three key concepts in various formats and in daily life to Adam – cooperation, patience and gratitude. In teaching Adam these concepts and ways to enact them in daily life, I also have to do so towards him. I’ll let you know how it goes.
Puberty will be challenging for Adam and for me. I am protective mother noticing the need and beginnings of separation. On the one hand it seems that Adam needs his structure and certain environments especially when he is feeling uncertain. On the other hand, he is truly becoming a teenager who is showing more signs of frustration and wanting to expand his world (this is different than bolting or escape but could be sometimes related). These may always be competing impulses in him, I don’t know. All I can tell is that they both exist within him. How do I give Adam boundaries and his own need for control over his own life now and ensure his safety? I’ll keep you posted on how this goes too.
This is Adam’s best friend. Aside from going back to camp this summer, which he is able to do with an assistant, this is the friend who Adam spends time with. We recognized it was a real, unscripted friendship when the two of them preferred to play without words, to roll around on the floor, or when Adam would lead his friend around the house to show him things. His friend is verbal and not autistic and seems to understand and have compassion for Adam, and I believe the feeling is mutual for Adam towards his friend.
There have been lots of events this past week, most importantly the decision to send him back to the school he attended two years ago, which is not an autism school, but a school for all kinds of wonderful kids. Adam had good friendships there; we could make adaptations in the way work was presented; he could show off his skills and he especially enjoyed the mentoring program when the older kids would teach him. There, he made lasting friendships that have stood the test of time – the same friends attend his camp, and they enjoy each other’s company. His typing stories is getting stronger this summer with our daily practice, and helping Adam with schedules and learning to be patient with me (I’m a single mom… I need his patience) is another important lesson he’s learning with success. Let’s just say, I’ve made these things my mission and I find when I attend to them carefully, we generally do well.
Here’s an example: Every weekend, he wants so badly to go to his grandparent’s house. There, he is soothed and served by my mother. My father gives him strong hugs and takes him on his long walks and subway rides. How could he not love the attention and understanding he receives there? (In fact, he loves them so much, I’m going to ask the TTC if they will take us on a special learning tour). If I don’t take him and I don’t have a plan, he had been getting quite distraught with me. I decided to let it be. I broke part of my foot on Friday and couldn’t do everything he asked. This prompted a teaching moment.
“Grandma’s house,” he demanded on Saturday, looking at me with determination in his eyes. I was a bit nervous he would bite his wrist if he got angry with me; he wears a chewy tube or heart around his neck so if he’s inclined to do so, he will choose that now instead.
“We can’t go today. We’ll go tomorrow,” I said, thinking whoops – that’s an abstract concept and I’m not sure if tomorrow could wait. What is tomorrow when we want it now? I tried making a calendar, and since he can read – I simply wrote in the plan for the days. We went through Saturday, then Sunday…
“Grandma’s house,” he said again emphatically.
“Not today. First we will eat lunch, then we will go for a drive,” I declared, thinking of my foot. Adam got out of the chair, he was sitting in, and I wondered what he was going to do next. Then, he walked towards the rotary phone I bought – to gain his interest in making telephone calls, since he seemed averse to talking on the phone. He picked up the receiver and began dialing. I quickly held up grandma and grandpa’s phone-number, just to make sure we weren’t calling Australia. He put his finger in each hole and dialed each number carefully. He began speaking into the phone, without my assistance.
“Hi,” he said quietly.
“Adam, may I listen?” I asked, knowing that my folks weren’t likely to be home. Sure enough it was the answering machine. “Okay, they’re not home,” I said to Adam. “Let’s call grandpa’s cell phone.” I held up the number for him to follow again and dial.
“Hello” he said into the receiver. Again, I did not know what was being said to Adam, or if anyone was even there. “I’m fine,” he said again. “I love you….can… I… go…to…your…house?” he asked softly, speaking each word deliberately.
“Adam,” I interjected. “May I please speak to grandpa?” I took the phone from Adam to ask my parents where they were and indeed, they were not going to be home. I asked if they would please tell Adam themselves (they were in the car on speaker phone).
“Tomorrow” I heard Adam say softly and he began to whine. “Bye.”
I was elated that Adam made his first phone call by himself. After that, we were able to follow through with the day without a hitch. I asked him if he wanted to go for ice cream, it went so well.
I waited for a bit. Then Adam declared…”White!” I realized that someone told me he had tried lemon once and really liked it.
“I think white is lemon, Adam,” I said.
We drove to the frozen yoghurt shop and indeed, he loved lemon.
So today, with my broken foot, I sent Adam along with his friend to Canada’s Wonderland where they shared rides and won a couple of prizes. I’ve been thinking of the typing, the relationship we share when we do it together, preparing Adam the way he needs to be prepared, and Adam’s strong desire to connect. I think when I spend more time with Adam typing and sharing, and when he can spend more time in sincere relationships that aren’t always highly verbal and difficult for him, he is a happier kid. Then, as I finished my Master’s Research Paper (more or less) today, I was thinking of Larry’s line in the movie Wretches and Jabberer’s when he speaks to Tracy about their trip to Japan and Sri Lanka, and they’re in dialogue about how nice it was that they traveled together: “Larry loops twice on that loving fellowship feeling.” Indeed, there is something about the summer that triggers these feelings -perhaps it’s simply more time – and I’ve learned how important these feelings are…all year long.
TORONTO, May 7, 2013 – The Law Commission of Ontario (LCO) is beginning a new project at the request of the Ontario government to address how adults with developmental or mental disabilities might be better enabled to participate in the federal Registered Disability Savings Plan (RSDP) created by the federal government without an expensive competency assessment.
The RDSP is a savings vehicle to provide future support for persons with disabilities. Parents or guardians may open an RDSP for a child. However, adults with intellectual disabilities and others whose competence may be an issue may face challenges in opening or withdrawing from an RDSP without undergoing an expensive and lengthy competency process. “We are extremely pleased to be asked by the Ontario government to undertake this project,” said Professor Bruce P. Elman, Chair of the LCO Board of Governors. “It reflects recognition of the high quality of the LCO’s work and its contribution to law reform in the province.”
The LCO will draw on work in two prior projects in which it has released final reports, its Framework for the Law as It Affects Older Adults and its Framework for the Law as It Affects Persons with Disabilities. It is currently undertaking a large project on capacity, decision-making and guardianship from which the RDSP project will benefit. The LCO will also call on the relationships with legal and academic experts and community members developed in the process of the older adults, persons with disabilities projects and capacity projects.
Launched in September 2007, the LCO is funded by the Law Foundation of Ontario, the Ministry of the Attorney General, Osgoode Hall Law School and the Law Society of Upper Canada, with additional financial and in-kind support from York University and support from the Ontario law schools. It is housed in the Ignat Kaneff Building, York University. It operates independently of government to recommend law reforms to enhance access to justice.
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Law Commission of Ontario
Inclusion Day at Ryerson University: July 6, 2013. or visit www.taaproject.com for a better view:
As we head into April, I thought I’d post Protest on the Plinth which states that the value system from the Nazi era hasn’t changed much today. If people make out disabled people’s lives to be “intolerable,” then how can we make safe legislation?” asks the disabled woman in the video. It is not egregious to point to what happened to the disabled during the Nazi era and unpack the value systems that linger today – that lead to the belief that disabled lives are an intolerable economic burden on society. Posters of the “costs” of the disabled to the German “folk” were commonplace.
Systemic mechanisms (government programs, schools, corporate bodies) that tell us what kinds of bodies (and minds) we are supposed to normalize, regulate, or get rid of, or what are “acceptable” minds and bodies. Charity campaigns don’t typically tell donors that they need to be patient as corporations or as individuals; that they to collaborate with disabled people, work alongside people with disabilities, or that it is a disabled person’s right to be educated (instead of remediated as a “ramp” to normative education -see Moore v. British Columbia, 2012). They don’t talk about autistic and disability rights. Charities are busy raising money, mainly, for cures.
When scientific and representational linguistics point to children “at risk,” we might instead ask, just who are we trying to “keep safe” and why is society so dreadfully afraid of people with disabilities? Remember to consider language and how it both reflects, and shapes, the way we consider people with the autism label. From where I’m standing, however, we are definitely at risk, not from autism, but from an intolerable society.
The purpose of the title is from historical readings that the disabled in history were displaced and living on the margins of society. Who were considered/are considered valued members of society? Socities have been obsessed with placing the disabled into a variety of contexts that justifies human existence, or fears (demons, monsters, mad, deviants) making the normal the privileged members. Without a comparative measure, as it were, what would we humans deem ourselves to be?
I have a series of questions that I’ll be considering (probably for a lifetime). Feel free to try and contribute thoughts in the comment box.
Pro/claiming Autistic Identity:
Is claiming biological identify leading to another possible eugenics movement? Is there a danger to biological self-identification? How important are self-identification and self-advocacy and pride-movements?
Are pride movements perpetuating the dis/abled dichotomies that already oppress? Do you think they have a positive purpose? Should there be a point at which we stop advancing pride movements, in other words, move beyond them? When is a good time to do so?
How important is the label autism to accommodation if autism is a social construct? (It is). Where “special” and enforcing “inclusion” have already proved challenging, maybe even impossible thus far, is it so because we continue to place the disabled out of the confines of the norm. In other words, are we continuing to perpetuate a false dichotomy that does little to value and serve, but more to segregate and isolate? By wanting inclusion, we are saying we are excluded? Does this stance further the goal itself, or not any longer?
Who Gets To Produce Knowledge About Autism?
The DSMV, behavioural analysis and observation, and the categorization of people.
Who gets to diagnose whom? Who gets to produce knowledge and categories about autism? In the past, and to a large extent today, it is non-autistic or “normal” people and we now witness a gradual inclusion of disabled “voices” to this mix. Do disabled individuals appropriate notions of impairment and abnormality enforced by long-held categories made originally by people who have not had disabilities? After all, autistic people are still largely tokenized minorities among autism charities, autism committees, and as participants in autism research studies.
Accommodation and Acceptance:
To what extent is the citing of needs/impairments an important part (or not) of acknowledging that we are all part of the abled-disabled continuum, which herein, I have already parsed?
Do you think the term autism and/or disability will exist one hundred years from now? Or are we a society that simply wears the same dress, just in different colours?
Have we learned anything from autistic self-advocates that assist us to simply accept autistic individuals and value the right of all people to exist, be educated, and be valued, no matter what level of disability, in society?
Utopias and ideals have perpetuated individual and societal notions about what we should be – what we are versus what we aspire to be. To what extent may this continue to be a driving force (as in survivial of the fittest) under an capitalist/economic lens, and where are we now with this “force” in viewing the disabled as part of this? As disability has always been a part of human existence, despite eugenics movement’s attempts at normalizing society and eradicating “deviant” people from the norms, how far have we come to accepting, embracing and valuing human difference? After all, while the eugenicists caused great harm to many people, and have continued to do so as a legacy, they didn’t succeed in eradicating human difference.*
*In reference to the eugenics movement from Davis, “Constructing Normalcy” in Enforcing Normalcy: Disability Deafness and the Body, pp. 23-49, 1995:
“The conflation of disability with depravity itself expressed itself in the formulation ‘defective class.’ As the president of the University of Wisconsin declared after World War One, ‘we know enough about eugenics so that if the knowledge were applied, the defective classes would disappear within a generation.’ At it must be reiterated that the eugenics movement was not stocked with eccentrics…Rockefeller, Churchill, Roosevelt, H.G. Wells, John Maynard Keynes”…among a longer list. Some food for thought when thinking about such questions.
I love my City of Toronto where I was born and have lived for most of my life. I’ve lived on the outerskirts and downtown and midtown and I never loose interest or discover new pockets of Toronto. I never liked “bedroom communities” and I don’t thrive well in them. As an art curator, I used to cite the many aesthetic issues as well as social consequences of bedroom communities when I had my own newspaper column, even though most of us don’t have any choice to live in them, as was the situation with my family. Others claim they prefer not to live in “the big city,” and that’s fine too. For me, however, I enjoy being able to walk out the door and take a few steps to the corner to get what I need, to walk or bike to, and be among people. When I talk about my city, I’m really talking about community and there are many notions of community that are important in discussing inclusion and people with disabilities.
After a divorce, I had to move back uptown. My partner and parents live downtown and I am backing-and-forthing. I’ve envisioned Adam’s future downtown, where transportation is accessible, where the chances of having employment could be easier because of accessibility to them; where support in the way of people may be more readily available, and for him to also feel a part of the daily pulse of life among his fellow citizens. I take it for granted, perhaps as a matter of necessity or as a premise unto itself, that he is a valued member of this community, even though we encounter many barriers and prejudices — sometimes subtle and other times overt. It’s an ideal, of course. At some point in the near or distant future, when our lives don’t demand the need to be uptown, I will move us mid or downtown again. Accessibility and being with people is key for me, my vision for Adam, and for our growth as a family that fit with my values.
Along Christie (it’s a street in Toronto), a quote from Jane Jacobs remained unfinished graffiti on a cement partition along the sidewalk. For nearly a year, only half the sentence was written, waiting for someone to bring a can of spray paint and fill it in. “Cities have the capability of providing something …” I felt compelled to drive up and down Christie for the past several years not only because it seems to be one of my favorite areas in Toronto, and one of the first points of arrival when my dad immigrated to Canada, but also because I wanted to see if the sentence would ever read complete.
About this time last year, someone filled it in, but it was incorrect. A few weeks later, it was erased. I waited again and kept driving. In the true Jane Jacob spirit, the practice of finishing the sentence, albeit a quote from her, had to be accessible and inclusive. (Thank goodness Mayor Rob Ford’s attempts at erasing all graffiti from the city didn’t strike this wall). Finally, a few months ago, the sentence was completed:
“Cities have the capability of providing something for everybody only because, and only when, they are created by everybody.”
The notion of creating and including everybody is appealing to me, and I gather for this reason, an idea was germinating. How can we cooperate and create our communities that support and include autistic people? Is there a way to use Jane Jacob’s model and discuss the pitfalls and possibilities of creating what we need for ourselves, outside of the systems that can sometimes oppress us? Is there a value to doing both? These are some of the questions I have in disability policy. I’d like to use this blog as a little laborartory for discussing these ideas, and for practicing them.
I used to adore Toronto. As an able-bodied person, it was relatively simple to get around and I appreciated having access to all Toronto had to offer. I didn’t pay attention to the lack of elevators, escalators and ramps. I am 30 years old and have multiple sclerosis now. I am no longer able-bodied but disabled. These days I use a cane or walker to aid my gait, making uncomplicated things more demanding. I now despise Toronto due to its lack of accessibility. I miss the things I once loved and want to enjoy them again but I cannot because establishments are inaccessible. Why am I being penalized for a disease that caused me to become disabled? Why is this kind of discrimination allowed?
His article highlights the ideas of various civic leaders and thinkers and some of the issues that confront people with disabilities in cities. One of them he cites is Iris Marion Young, the author of Justice and the Politics of Difference to present a series of interesting premises’ in the creation of accessible cities/communities:
“In the city,” writes Young, “persons and groups interact within spaces and institutions they all experience themselves as belonging to, but without those interactions dissolving into unity of commonness” (1990: 237). Several premises are contained in this statement. One is that people, as individuals and in groups, have the capacity and opportunity to participate and interact with other people. A second is that sufficient and accessible public spaces and institutions exist throughout cities to enable the being together. A democratic politics, Young stresses “crucially depends on the existence of spaces and forums to which everyone has access” to participate — to speak, listen and bear witness (1990: 240). A third premise is that such interactions generate common experiences of belonging, a basic component of citizenship according to most commentators on the topic. Certainly, for people with disabilities, these public spaces require supports, services and likely adaptations to enable all to speak, to listen and bear witness, regardless of their abilities and capacities. The fourth premise is that individuals and groups participating in such public places and institutions are able, at the same time, to maintain a sense of their own distinctiveness, special status or group identity. Perspective 4 therefore contains, as do the other perspectives, a number of empirical perquisites, behavioural expectations and normative claims.
While the ideals of Jane Jacobs may not as of yet have reached our cities and communities, I think her notion of “creation by everyone” is a vital link to thinking about how we build them.
Attending IMFAR for me this year raised many more questions, if not affirmed some of my assumptions about the extent (or not) to which autistic individuals are involved in research as well as autism organizations. While more autistic people may be in attendance at conferences, or may sit as board members, issues about “tokenism” arise; to what extent do we enable autistic individuals to create a meaninful autism agenda? That is, who is establishing the questions about autism to be researched? Who is directing the goals of an autism organization?
Temple Grandin spoke at IMFAR at Toronto this year by webcam/Skype. She urged autism researchers to look at issues effecting autistic quality of life, rather than more studies on “face recognition.” Yet she did not acknowledge that many of these researchers are, a) not autistic or, b) do not practice emancipatory or participatory research. Was this done for politcial reasons, or was it a gentle nudge to send more accepted research paradigms in directions that may be of use to autistic people, or perhaps an oversight? By definition,
“Emacipatory research (that is research which seeks to alleviate oppression) is critical in exposing the mechanisms for producing, maintaining and leigtimising social inequities and domination.” (Ayesha Vernon, “Reflexivity: The dilemmas of researching from the inside” in The Disability Press.)
My assumption is that while Grandin is urging the researchers to reflect on what is important to autistic people, the model is more challenging at IMFAR which is largely based on a non autistic view of how autistic people think, perceive, function. The research was largely targetted to the “high-functioning” autistic population, likely, because this was the most effective, cost-efficient and timely way to complete the research projects. They did not employ emancipatory methods which may not use more common research designs. It is non autistic people largely determining what’s best for autistic people and the balance of power is clearly skewed — it is the researcher directing the goal of the reserach and the relationship of researcher-subject is established. Some quantitative research by autistic researchers has been presented at IMFAR, and we do need more in support of the issues and needs that are produced and articulated by people with autism. As non autistic people, charity organizers and researchers we have to acknowledge when we are looking from the outside-in, and consider changing our approaches in order to provide services that are directed by the autistic community.
Issues arise when thinking of involving autistic participants in establishing the research question, or the agenda of an organization. Sitting on boards with non verbal participants with significant challenges, non autistic members have to exercise patience and understanding with the length of time and the various outputs that enable an autistic person to participate, as an example. Some individuals communicate by typing very slowly, or using other text-to-speech devices. For others who do not have an organized communciation system, the issue of involvement and later, dissemination of the research that is useful to autistic people becomes complex. Some have worked around the issue by stating that the autistic with the more proficient communication system is at least accomplishing part of the task of inclusion. We have to work on offering solutions to participation and autistic direction.
As the founder of The Autism Acceptance Project, I experienced these tensions of working as a non autistic person in an autistic space and tried to resist controling the agenda, and admittedly while I sought a lot of direction from autistic people, this was very difficult to do. As an organized and fairly driven person, setting my own assumptions aside still requires me to slow down and think about my design of the TAAProject website: from to how to include autistic individuals in a way that they can direct the project while using my skills, and theirs, to developing the tools to perhaps target some of the issues that are barriers for all organizations that do not fully integrate and employ the needs and issues of our autistic community.
In addition to the intensive labour and time required to set up empancipatory research projects and the change the structure of autism organizations — both which seek to amelieorate the social oppression of autistic people — their is little capital out there for this. The larger autism charities focus more on causation research and are better capitalized as opposed to volunteer autism organizations more often led by autistic people (Arnold). So, if you are a researcher endeavouring to do this kind of research in autism, The Autism Acceptance Project would like to hear from you.
“Disability research should not be seen as a set of technical objective procedures carried out by ‘experts’ but part of the struggle by disabled people to challenge the oppression they currently experience in their lives.” (Oliver, 1992).
Vernon, Aeysha (1997) Reflexivity: The dilemmas of reseraching from the inside, in Colin Barnes & Geof Mercer (eds.) Doing Disability Research (Leeds, UK; The Disability Press) 00. 158-176.
Preistly, Mark (1997) Who’s research? A personal audit, in Colin Barnes & Geof Mercer (eds.) IBID., pp. 88-107.
We are The Adam Family. As we grow into our lives with autism, it becomes increasingly difficult to see the “normal” world as the actual opposite of what it purports to be by that label. The more on the margins of society we seem sit, the more absurd “the rules” seem to be. In thinking more about Inclusion and The Canadian Charter of Rights and Freedoms, I realized that the idea of Adam having his own family, therefore, is not a sight-out-of-reach. It is a possibility, his choice, and right which must be enabled and protected. How, on earth, if you are a new parent to an autistic child, particularly one like mine who has limited verbal ability, could this be possible? Well, it may seem a bit quirky, and some would be up-in-arms against us citing us as a future social welfare burden, but first let share this take on The Addam’s Family series:
Much of the humor derives from their culture clash with the rest of the world. They invariably treat normal visitors with great warmth and courtesy, even though their guests often have evil intentions. They are puzzled by the horrified reactions to their (to them) good-natured and normal behavior since they are under the impression that their tastes are shared by most of society. Accordingly they view “conventional” tastes with generally tolerant suspicion. For example, Fester once cites a neighboring family’s meticulously maintained petunia patches as evidence that they are “nothing but riff-raff.” A recurring theme in the epilogue of many episodes was the Addamses getting an update on the most recent visitor to their home, either via something in the newspaper or a phone call. Invariably, as a result of their visit to the Addamses, the visitor would be institutionalized, change professions, move out of the country, or have some other negative life-changing event. The Addamses would always misinterpret the update and see it as good news for that most recent visitor.
I wish we could all live with the same conviction. When parents get frightened about autism, it’s usually because of fear for the future – will my child get married, go to school, have friends? The pressure to conform the unconformable is immense. For many years I quietly shared the same worries, although I feel my worries were more rooted in society’s acceptance of Adam. My viewpoint is shared with the more widespread social model of disability — that our modern definition of disabled is a term to describe the social barriers that make a life living with an impairment exclusive/segregated. There are naturally going to be times in the beginning of having an autism diagnosis, most-likely if we’ve never experienced disability before, that we will be thinking in terms of our own lives, how we grew up, went to school, made friends, had our first boy/girlfriends and later, maybe even got married and had families of our own. When we don’t see our children doing the same things in typical ways, we worry for them and maybe even for ourselves. The life trajectory is one that our society uses to plan every stage of our lives from how we go to school, to what we are supposed to become, to building our retirement nest-egg.
We expect to be on a path that is economically driven. We are raised to comply, to be a part of society. About a century ago, the formation of “school” was intended to prepare children for later entrance to the military. Today, we plan for our babies at the get-go with pre-school and envision them at Harvard – the ultimate preparation for a new kind of regime. We prepare our little ones for the economic march into consumerist culture. Our frame of reference for understanding is capitalist. Erich Fromm believed that we tend to categorize individuals “according to various types of status, to glorify superiors, and to look down on those who are regarded as of lower rank (e.g. persons belonging to other ‘races’) – must be understood in light of an authoritarian upbringing, which in turn is associated with other general authoritarian tendencies in the workplace and society in general.” (Alvesson and Sköldberg). That “authority” well, to coin James Carville, is “the economy, stupid.” (I’m using Carville’s words and am not implying anyone is stupid. I want to acknowledge the sensitivity I actually have when people use words that can be used violently). While resources are an issue for supporting autistic individuals, others site Libreralism as a issue as it put great stake in “liberty, automony and choice… Given the reality that some persons with disabilities will necessarily be in situations of intense dependency and reliance, can liberty and autonomy — with their emphasis on freedom from — really be the lodestars liberalism has assumed?” (Devlin and Pothier).
When we bring an autistic child into the world, we don’t fit the model pretty much from day one and especially after our children receive their first official diagnosis. We try to squeeze into charitable models for definitions of our existence, but they feel uncomfortable, placing us in (again) subordinate positions yielding to the “power” of the do-gooder/philanthropist and the “experts” in receipt of their research funds – an unequal relationship. Our families collide with ideologies that we are forced to question. Not “fitting in” is another way of describing how we are placed on the margins of society, or discriminated against. Relatively recent disability laws are made to protect us from exclusion, giving our children full citizenship rights.
Still, we struggle find such justice for them within their daily lives. We first look to school systems and are met with the red-tape of the process of getting IEP’s and special accommodations and quickly realize it’s a legal issue and process. I often wonder which “side” that law protects. We parents (I am writing as a mother so I have to assume that if you are disabled/autistic reading this, you will understand that I recognize this also as your issue) don’t count on having to fill in reams of paper applications, spending hours in meetings, navigating government support systems and administration when we are swaddling our new bundles-of-joy. The navigation to be special – not that it’s our choice – indicates from the start that we’re not supposed to be this way. Our children aren’t supposed to be autistic and public schools protect themselves from us with the red-tape, and we have to fight for our children to be included, not marginally integrated or tokenized. Most of us don’t “fight,” we become diplomatic contortionists and try to get our kids “in” to the extent we can. While it’s a worthy fight, it’s still one that we’d rather not spend our time on. We look forward to the day when autism – about twenty to thirty years behind our recongition of other disabilities, including intellectual disabilities – is widely accepted and welcomed in society. With that welcoming is also a recognition of the intersections between race, culture, gender among other interlocking connections, that make up experience.
As I let Adam go into the world, with the support he needs in order to be an equal citizen, I am always working on my visions for him as a parent. The other day, I thought long and hard about a photo I collected from Toronto’s Abilities Arts Festival a few years ago. It is a photo where two intellectually disabled parents sit on the couch with their three typical children — a “normal” family photo called “Lucky Strike.” The subjects also wrote a paragraph about how they got married and had a family with the help of their support workers. It dawned on me about Adam and his family: there is no reason why Adam may not have a family of his own, by accident or by choice as is the cycle of life for many a typical person. There is no reason why he cannot attend higher-education as an adult. There is no reason why he cannot participate in whatever he wants. It is, after all, the law, granted, subject to enforcement as well as interpretation and dominant social attitudes that are still weighted against the disabled person. We also know that not all our rights are enacted and there is a hesitancy by many families and individuals to go through the legal process. Not all universities understand the need and function of the aide worker. Although York University accommodates people with disabilities, it found itself in a legal dispute with Ashif Jaffer, a student with Down syndrome, because he claimed the university did not accommodate his needs. For these reasons, we have to keep on working hard, and likely take a few risks, for the rights of our beloved family members to be included with the accommodations that they require. This means also the help of aide workers and various technologies, among many other individualized needs.
People can have families and also be supported by others. Our children, even our non-verbal ones, can have a say in their plans and lives with guided decision-making practices. Non-verbal people may be able to type or write visual essays and participate in research about autism, and all autistic people have a right to both participate in research and have results disseminated to them in ways they can use and understand. Check out websites on emancipatory research and visual essay formats. No it’s not easy to do, but we’re starting to do it and we are inevitably going to learn by doing.
An “emancipatory” life requires support and that support requires a vision of possibility, enablement, democracy and a plan. As a paraplegic requires a wheelchair, many an autistic person requires people in their lives to support them getting to and from destinations, to having families, to making decisions, to managing the many details of life. Some of this right now is a privilege for the families that can afford them. It is, however, everyone’s right and I for one want to hear more stories about how families and autistic people are helping to let autistic people live their lives as autistic people. For the families who are able to provide the supports we seek from society and governments, we need to hear your stories in order to provide more buidling blocks of enablement.
What is independence? I can’t work on the technology of my computer on my own. I need tons of help with it. I need extra hands to help me around the house and in managing a schedule as a single mother. I need teachers, handy-men and someone to help me when I’m ill. I build my human network as a result of necessity. Others also need me and I am able to lend my hand or my special skill set. For reasons revolving around Adam, I am sensitive to our capitalist notions of independence and how that seems to relate to the family and school. Are we creating communities of people who are interdependent on each other, or human silos? How “happy” does that latter future look like sitting there all alone in them?
Here’s a future that I can see unraveling before my eyes, despite the struggles, tensions and issues we presently encounter and grapple with: I see more people employed in these areas to assist and guide, but further than this, to balance the power that can be offset by the “abled versus the disabled.” Ergo the terms “assistants and aide-workers,” not therapists. I see more effort towards emancipatory lives for the autistic, of all “functioning” levels. I see our growing ability to understand and respect one another, to honour the visual way and other modes of learning and communicating, presenting and even reading the materials by individuals with autism. It is a reciprocal human economy with autistic people in it.
For the first time since I’ve had Adam, I imagine that it might be possible, as Adam is my only-child, that I could one day be a grandmother after-all. It was actually one thing that made me a little sad when Adam was diagnosed — the world seemed to be locking its doors to us so soon. Of course, all of this is Adam’s choice, hopefully. It’s the choice that matters. The principles upon which I now imagine and locate our lives, in practice as well as principle, is one of possibility and of how our lives can be enriched, even made better, by including autistic people in them.
Adam’s life should be one of his own making, and I am here to support him down his many paths. The questions I now ask more often, are not only about how much work does Adam must do (as the onus has, to-date, largely be on the autistic person to become more normal before s/he can participate in society), but how can I help him obtain for himself not just a “quality of life,” but a vibrancy, of life — the excitement of possibility and choice — that many of us took for granted while we were growing up? This also belongs to him.
This can be our future — for our children and even for us as parents of autistic children. This isour Adam Family.
I’m a PhD candidate at York University, Critical Disability Studies, with a multi-disciplinary background in the arts as a curator and writer. I am the Founder of The Autism Acceptance Project (www.taaproject.com), and an enamoured mother of my only son who lives with the autism label. I like to write about our journey, critical issues regarding autism in the area of human rights, law, and social justice, as well as reflexive practices in (auto)ethnographic writing about autism.
because finding joy doesn't come without struggle;
because the point is to find it;
because if an autistic person calls autism their way of being, not an illness, then it is;
because every human has value and is a joy;
because despite inhumane acts, I believe in humanity;
but most of all, because of my son Adam.