Open Letter to Canadian disability rights organizations:
As autistic people, we are honoured to be working with you for disability justice. Our partnerships, friendships and connections are precious to us. Thank you.
We are writing because it is important for you to know about a specific group that is actively working against autistic human rights. We are asking that you do not endorse or work with this group because, in our view, to do so is to threaten the well-being and safety of autistic people. That group, Autism Speaks, is an organization with a “eugenics” focus that is the driving force behind the proposed National Autism Strategy in Canada.
Autism Speaks has allocated hundreds of millions of dollars towards “eugenics” projects that may seek to prevent autistic people from being born.
Autism Speaks is a co-founder of the MSSNG project, a massive, far-reaching project to make a global database of 10,000+ autistic children’s DNA available for use by researchers throughout the world who can fill out a pop-up menu on their website to access it.
One of the project’s co-founders, Dr. James Watson, was fired from Cold Spring Harbour Laboratory for his racist remarks about African Americans, intelligence and using eugenics to find “a cure for stupid”.
In addition to the basic eugenics of the MSSNG project, consider also the message that MSSNG sends to those of us who are right here, now: that our lives are not worth living and we would be better off to never have been born.
In addition to MSSNG, Autism Speaks funds the Autism Tissue Program (Autism BrainNet), a network that distributes brain tissues donated by parents of deceased autistic children for “research into the causes of autism.”
In Iceland, the type of genetic testing that the MSSNG project does, is already being used for the mass-abortion of fetuses with Downs Syndrome.
As Ontario mom Deanne Shoyer recently wrote:“I’m not going to support any organization who wishes my sons could have been prevented.”
From its inception, Autism Speaks has built its fundraising enterprise on telling stories about autistic people that portray us as a burden on our families.
Their 2009 video “I Am Autism” is narrated by a disembodied gravelly-throated man with images of autistic children as though they are sub-human, saying:
“I am Autism. I know where you live and I live there too. And if you’re happily married, I will make sure your marriage fails. Your money will fall into my hands and I will bankrupt you for my own personal gain. I will make it impossible for your family to attend any events without a struggle, without embarrassment, without pain. …You have no cure for me.”
In the US, the Autistic Self-Advocacy Organization recently cut ties with Sesame Street and the Ad Council for their partnership with Autism Speaks on its “100 Day Kit,” which: “encourages parents to blame family difficulties on their autistic child and to view autism as a terrible disease from which their child can ‘get better.’”
In Autism Speaks’ 2006 video Autism Every Day, its Executive Vice President Alison Singer described how she dreamed of driving her autistic daughter “off the George Washington Bridge”. The story was used to gain sympathy for the “tragedy” of autism – and gain donor dollars for the organization.
We don’t want a “cure”. We want to be accepted for who we are, and given access to all the rights that non-autistic people enjoy in our country.
Autism Speaks’ projects are built on the medical model of disability, which keeps us segregated and oppressed.
Autism Speaks’ national march in Washington DC recently featured the Judge Rotenberg Center (JRC) at its Family Resource fair. The JRC has been sanctioned by the US government for using shock torture on residents at its facility.
The United Nations has condemned the JRC’s practices as torture, the U.S. Department of Justice’s civil rights division is investigating the JRC and the FDA has recently banned the JRC’s shock torture.
Yet the institution remains remorseless even though 6 residents have died directly or indirectly as a result of torture there.
Most autistics view ABA as akin to “dog training,” a dehumanizing approach that should be banned. In fact, ABA industry makes no secret of the fact that it is used on both dogs and humans.
Autism Speaks Canada is a major funder of CASDA, who collaborates with Autism Speaks on the proposed National Autism Strategy
In Canada, together with their partner CASDA, Autism Speaks supports the National Autism Strategy, a project that will increase funding for segregated housing & services, ABA and other oppressive programs.
We want you to know that if you partner with CASDA, you are also partnering with Autism Speaks–and in our view working against the ideals of disability justice. The issue of who controls autism policy in Canada is also about who controls our lives and/or whether we even get to live them. That’s why we’re reaching out, because this is extremely important for the future well-being of us all.
Thank you for taking the time to read this letter. If you have more questions, please contact us anytime. Thank you.
Zosia: Hello, welcome to the show. Would you be able to introduce yourself to the audience?
Darla: My name is Darla. I am an autistic self-advocate and AAC user from Ottawa, Canada. I work as an e-learning specialist and freelance editor and technical writer. I am also a member of the autistic self-advocacy group, A4A, and have been involved in some of our presentations to community groups.
Zosia: So, what is AAC? Darla: AAC stands for augmentative and alternative communication, which is a very proverbial long mouthful of a phrase. AAC is essentially any method used to communicate which is not mouth speech.
Most often it is using either a specialized app or device, a board, or a book of symbols or letters. In high tech AAC, the user selects symbols corresponding to words or phrases, or types on a keyboard, and the program will read what we say out loud. In low tech forms, like a letter board or a book of symbols, the person will point or indicate via eye gaze which they mean and a communication partner will interpret them.
For example, I use two different apps for Apple devices, Proloquo2Go and Proloquo4Text, which are made by a Dutch company called AssistiveWare. Proloquo2Go uses symbols, so if I want to order a large black coffee I might touch the symbols for I, would, like, a, large, black, and coffee, and then I would have the device speak my message. But I mostly use Proloquo4Text, which is a text to speech app. It also lets me type and store messages and responses, so I can prepare what I will say at a meeting or appointment beforehand and play it when I need to. But everyone uses some form of AAC. Text or instant messaging, Facebook posts, even sending memes is a form of AAC.
Some people also use sign language, although there is some contention in calling it AAC as it is the primary language of the deaf community and thus is not an alternative. Zosia: So what has been developed to aid those using AAC to communicate about COVID-19?
Darla: The level of support coming from the AAC community overall has been just fantastic. One company, CoughDrop, expanded their trial period to four months so that people who used the app on a device owned by a school or day program could remain connected with their support teams. AssistiveWare has started organizing video chats, some for families, some for adult users, to keep people connected and help maintain community. Nonprofits like Communication Disabilities Access Canada, and the International Society for AAC, ISAAC, have been putting out a lot of materials to assist there. Disabled self-advocacy groups have been doing some amazing work writing clear language explanations and suggestions of what to do and how to cope.
Zosia: Do you feel that the accessibility measures regarding language have been adequately shared to those needing them? Darla: That is a really good question…and I am honestly not sure. The issue with any disability advocacy is that it always transmits well within a limited circle, but outside of those circles things get more complicated. With that said, groups like CDAC and ISAAC have done phenomenal jobs communicating with their members. So…I guess I hope that they are getting shared far enough, but I worry that there will always be communities–especially since many resources are just produced in English–which are not reached.
Zosia: And have Canada’s governments, or international bodies like the World Health Organization, released information for AAC or has it been primarily created by the community that uses it?
Darla: It’s been pretty much entirely coming from the AAC community. I don’t think I have seen anything from WHO or Health Canada or the like specifically speaking to AAC users.
Zosia: What are the benefits of these softwares being community-sourced and how can official information be beneficial?
Darla: Oh. Wow. Tough question. So, the benefit of working with the AAC community is the same as any software developer working with their user base. We help identify major issues and changes that would help us the most.
For instance, many of us need to make phone calls for things like medical appointments, but don’t always have someone else to make the call for us. So AssistiveWare recently added a feature to their apps which lets them interface with the phone function of iPads and iPhones so that what you type is heard by the person you are speaking with. This has been a game changer, especially during social distancing and isolation where we cannot visit friends or loved ones, let alone our doctors or therapists.
Zosia: What needs to be implemented to ensure proper care for those requiring AAC should they contract Coronavirus?
Darla: That is a scary question. First, all AAC devices and objects need to be cleaned thoroughly, as they are high touch, high contact items, meaning they can be vectors for the virus to spread. AAC users may require more communication support, as being sick and feverish makes communication harder. For me, for example, when I am sick I have a lot more trouble with motor planning, and I stim a lot more, so I will use a symbol app like Proloquo2Go because typing is harder.
We may also see otherwise abled people benefit from AAC use because they are intubated or unable to speak due to coughing. Everyone benefits from wider AAC access during these situations.
But COVID is also a real threat to the AAC community because so many people with communication disabilities are often in other high risk groups. They may have other conditions which weaken their immune systems, or have a greater tendency towards respiratory illness or infection, or a greater difficulty with maintaining hand hygiene due to physical or developmental disability.
Zosia: Do hospitals already have AAC software available should people needing the technology be hospitalized due to COVID-19 symptoms?
Darla: Honestly, the state of AAC in hospitals has been very haphazard. There is not a lot of education about AAC use, especially from individuals who are independent or not visibly physically disabled.
There is a huge issue in the medical community where care providers speak to support workers or parents instead of the disabled patient. There have also been cases where people’s devices have been taken away from them for various reasons that amounted to ignorance of what a device is for or what a person is capable of for communication.
There is very little direct training on AAC use, and if it comes from any department it generally comes from the speech language pathologists, and hospitals generally will not be providing the software. At best they might have some printed-off symbol or letter boards, but even that is very up in the air. This is especially bad for patients who are admitted for mental health issues, as they are very likely to have their device removed, especially if they have a record of any speech ability. Given that many autistic people who use AAC may also have mental health problems, this is a huge issue.
Zosia: What are other accessibility concerns during this pandemic for non-verbal or minimally-verbal people?
Darla: The biggest accessibility concern, and fear, is this: If I go into the hospital full of unfamiliar people, will they respect my communication? Will I be allowed to keep my device? Will my competence be presumed or will they infantilize me and treat me like a child? Will I be allowed to make medical decisions for myself? Another issue is that describing my body and what is going on inside it is very difficult for me, and for many others. If I suspect I have COVID, will a doctor or nurse take that seriously? Will I be able to speak with someone over the phone who will understand my device?
These concerns are very real, and a lot of people are grappling with them, but I am unsure how best to deal with them. One thing I do recommend is that AAC users and/or those supporting them come up with a plan for hospitalization. Have a fully written-up list documenting disability, medications, necessary equipment, how to best communicate with us, etc. I have seen some great resources for this from groups like CDAC, and I have a lot of stuff programmed into my device should I be hospitalized to help there also.
Zosia: Do you feel that the government has done enough to protect disabled lives during this pandemic?
Darla: In Canada, I think there is more awareness of it, but people are also seeing what is happening in places like Italy and America, where hospitals are publicly stating that they essentially do not value the lives of disabled people as much of those of abled. Hospitals in America are saying that they will confiscate medically necessary ventilators from disabled people who are hospitalized, even if it’s not related to COVID-19 and the person has a good chance of surviving. This is going to reduce the trust that the disabled community places in hospitals.
There is also the issue that while many Canadians are receiving financial help, financial supports for disabled Canadians have not gone up in years, and yet disabled people who cannot work are still expected to pay increasing rent and inflated prices as food and medical supply costs continue to rise. I worry what may happen in Canada, and I would like to see our government speak out clearly in support of its disabled citizens. Disabled lives are already undervalued by the medical system, and we must act to ensure that disabled children and adults are not sacrificed in the name of expediency.
I am not in ODSP [Ontario Disability Support Program] but my friends who are on it are definitely feeling a lot of distress right now over it. However, I don’t think we will see much change there, as the Ford government in Ontario, and Kenney in Alberta, have been pretty clear that they don’t think disabled people deserve much or deserve to live well. I would hope that we would see payments increase, but I don’t have a lot of confidence there.
Zosia: So what can governments do to better protect disabled lives during the COVID-19 crisis?
Darla: Aside from making a clear statement to the value of disabled lives, governments need to put more money into the welfare systems that support so many disabled people who are not able to work. There need to be more supports around shopping, such as stores having specific times for disabled and elderly people to shop.
There also needs to be an understanding and flexibility in disability policy because disability does not fit well into a single uniform box, people have different needs and so disability policy needs to be wide and flexible.
Zosia: How can listeners learn more about AAC?
Darla: I would recommend checking out groups like Communication Disabilities Access Canada, the International Society for AAC, and advocacy groups like Communication First, A4A Ontario, and the Autistic Self-Advocacy Network.
Zosia: And how can listeners support your work?
Darla: I don’t have any specific projects I am working on right now to promote. But I urge all listeners to remain indoors, only go out for necessities, and to maintain social distancing. Please, take precautions, wash your hands, keep your contact with other people limited.
This will last for a while, but then it will be over…but only if we work hard to flatten the curve and minimize the spread now. I know it is hard, but there are many people, many of my friends, whose lives depend on bringing this virus under control.
This week Ontarians learned the shocking news that 37 out of 42 residents at Participation House, a residential institution for intellectually/developmentally disabled (IDD) Ontarians, have tested positive for COVID 19. At least 12 staff have also tested positive, and at least 80 staff stopped working. Participation House is now scrambling to find care workers, with the help of the Province.
In Ontario, 114 long-term care facilities are now dealing with COVID-19 outbreaks, including at least 11 dedicated institutional housing for intellectually and developmentally disabled (IDD) individuals. Nationally, more than 600 residential institutions are having COVID outbreaks.
But this is not just a provincial problem, it is national in scope. And it is not merely lack of pandemic preparedness that has led to the outbreaks, it is the very nature of segregated, congregate housing itself, with its transient workforce, lack of oversight, and structural deficits that lead to mass-illness outbreaks and a host of other medical, social and emotional-health risks for residents. And now, more deaths.
It didn’t have to be this way.
Residential institutions “the norm” for IDD Ontarians
In Ontario 9,600 people are in residential institutions, including 2,900 developmentally disabled adults (and some youth) who are in long-term care homes (LTC).
Long-term care homes are intended to be only for the elderly since the province closed down residential institutions a decade ago, but a lack of political will to make the real changes essential to de-institutionalization means that IDD people continue to be placed in seniors’ homes, hospitals or in other large segregated facilities.
“People get forced into them because of a lack of resources, then the government says they ‘chose’ the facility,” says Patricia Spindel, an expert in Community Health and Developmental Services.
Carl, a man who works in this sector but did not want his name used says: “Parents want independence for their children, a place to live after they [the parents] die. And institutional living is often presented to them as the only choice.”
In response to pressure in 2015, Ontario’s Minister of Health committed $810 million to relocate some people out of large institutions. However, it only moved them into what Carl calls “small i institutions,” group homes and other segregated residences. “It’s like the government doesn’t understand other options than group homes, which are really just a smaller-scale version of the institution,” he says. “[Residents] still room together and don’t choose their roommate. The fridges are locked. They can’t come and go. They can’t make any choices. They don’t have freedom.”
Research shows that integrated housing–where IDD people live in their own apartments in their community, instead of segregated institutions–leads to better quality of life and outcomes. Yet less than 20% of federal housing funds for IDD people is allocated to programs for integrated housing. In addition, the Government of Canada has not acknowledged that IDD people should have a say in their personal support workers, a right that is acknowledged for people with other disabilities.
“The disability rights movement has had successes, but in Canada very few of those successes have been for people with intellectual or developmental disabilities,” says Anne Borden King of A4A.
Institutions and group homes: Unregulated, uninspected
Right now, more than 600 LTC homes have reported COVID outbreaks–a number that is growing–and there is also an increase in smaller group home outbreaks. Factors cited include a lack of oversight and inspection of the facilities, and no uniform standards of care to adequately prevent the spread of illness.
A shocking report by the CBC found that last year, only 9 out of 626 homes in Ontario actually received resident quality inspections (RQIs), an essential safeguard in the form of unannounced inspections and follow up.
“The Ontario homes that have had multiple deaths from COVID-19 were not among the few that had resident quality inspections last year” reports the CBC.
There are no figures for smaller group homes, where there is no governmental database for collecting information about deaths, injury or even crime. Jennifer, who works in the independent living sector and spoke on the condition of anonymity says, “I think a big part of this story is that COVID is helping us understand that we don’t know much about these ‘mini institutions’ or who is in them or who runs them.”
When it comes to group homes “it’s a wild west,” says King. “When we drafted reports to the provincial and federal governments last year, we asked experts to show us the universal guidelines for vetting staff, for inspections… but there were no such guidelines. A lot of these places are privately run, even as they use public funds. And there is no broad oversight.”
Because each home or provider has their own policy, there are also no uniform protocols for disease control during the COVID crisis. Some homes have ended visitation and canceled event or taken other action, but few have plans in place for preventing the spread of COVID or what to do when someone gets sick. This has led many to speculate that the unfolding disaster in LTCs could have been prevented with better preparedness.
Health and safety risks go beyond COVID as well. King cited A4A’s reports to the United Nations Health rapporteur and to the Province of Ontario which reported incidents in Ontario group homes where staff were not vetted, including one staffer who had been previously convicted of assault on a resident only to be rehired and commit another assault against a resident, for which he is serving jail time. In another institution, a staffer stalked and attempted to murder a resident in the woods on its grounds, for which he is now serving 20 years in prison. This institution, which is currently the subject of a class action lawsuit on human rights grounds, continues to house youth under the age of 18. “We’re making a mistake if we think that bringing in more staff is going to stop the crisis with our institutions,” says King. “It’s like putting a Band-Aid on a gushing wound.”
“No priority for integrated housing”
The shameful fact is, 10 years after most provinces and territories officially closed their large residential institutions for IDD people, Canada never really began the true transition for its IDD residents—from institutional living to integrated lives within the community.
In Canada today, more than 80% of federal housing dollars for housing for IDD Canadians still goes towards segregated housing units, including the building of new residential institutions. Social workers often present segregated housing to people and their families as the “best” approach for the future. But in reality, it’s not the best opportunity—it is simply the only one.
Contrast this to the US, where from 1977 to 2010, the proportion of IDD Americans in large residential institutions fell from 35.8% to 4.2%. While the US has not had a perfect trajectory for this transition, Canada’s has been at nearly a standstill, with no known government commitment to it.
In the US, a federally-funded program entitled “Money Follows the Person” (which allows for money currently being paid to institutions to follow people into the community) has been funded through November 2020. So far it has helped 91,000 people move out of institutions and into their own homes. An additional 800,000+ Americans are now living in community settings with home- and community-based services and supports.
Money Follows the Person is also giving states another tool to move people with disabilities out of dangerous congregate settings during the COVID crisis.
Why hasn’t any of this happened here in Canada?
Evidence for integrated housing
Integrated housing for IDD people means that a person has their own home, such as cohabiting or living solo with supports in an apartment building that houses both non-disabled and disabled residents. Studies show this approach leads to better quality of life and life outcomes. With this model, people can choose their own roommates, pick their own personal support staff and make supported decisions about their daily life.
According to the Autistic Self-Advocacy Network, which studied both segregated (institution/group home) and integrated housing in the US: “Research shows that this trend has resulted in better life outcomes for people with disabilities. Compared with people who live in larger congregate settings or institutions, people with disabilities who live in small community settings have a higher overall quality of life, more friends, more opportunities to make choices about their lives, more opportunities to develop and maintain skills, and higher satisfaction with their living arrangements.”
So why hasn’t Canada begun to move away from segregated housing to the kind of integration that’s taken root outside of Canada? “I think the answer may be pretty simple,” says King. “It may be that they’re funding projects for segregated houses because that’s just the way they’ve always done things. And in some ways, confronting that dynamic is the biggest challenge of all.”
As the week comes to an end, former Ontario MP Jane Philpott has issued an appeal for RNs and other health providers to step in to provide support at Participation House:
“We need great RNs, RPNs and PSWs immediately,” she tweeted. “In the last 4 days as I get to know the residents of Participation House they have captured my heart. We can’t let them down. They are beautiful people who need the very best of care at this challenging time.”
Participation House–and so many other institutions like it–are in a long-term crisis. It would be a mistake to think that once we bring more service workers in for now, we’ve solved the health and safety problem at residential institutions. The fact is, IDD Canadians should not be living in residential institutions and nursing homes at all. Canada needs to catch up with best practices and better ways. Integrated housing is possible and the Money Follows the Person model works.
Our government can’t just keep promising to “fix” residential institutions for IDD people: it needs to abolish them.
What should the federal government do?
The Government of Canada should commit to a total reform of its policy on housing for intellectually and developmentally disabled people.
This reform should be driven by experts in integrated housing, in partnership with self-advocacy organizations and based on the Money Follows the Person model.
This change can not be achieved if our government merely engages the same nonprofit entities it always does, those who profit from segregated housing. The Government of Canada needs to engage new ideas, new groups and new people to make these changes possible.
What can we all do now?
There are things that we can all do to help, right now.
Please contact your federal Member of Parliament by phone or mail. (Do not email: some MPs do not read constituent emails).
If you’re comfortable speaking on the phone, ask for a phone meeting with them or an aide.
Tell them that you are concerned about COVID and other diseases spreading in institutions and group homes for IDD people.
Ask why the government still spends 80% of its IDD housing funds on segregated housing for intellectually disabled people, instead of integrated housing (having one’s own home in the community near friends and family).
Tell them that studies show integrated housing works best for intellectually/developmentally disabled people. Explain that it is being done in the US and Europe.
Zosia: Hi and welcome to the show. I’m here with Anne from Autistics for Autistics Ontario. Anne, would you be able to describe the history of your organization?
Anne: Yes, it’s great to be here too…thank you for inviting me. Our organization was founded in November 2017 and it was co-founded– I’m one of the co-founders—as a way for autistic people to be able to speak for ourselves, so it’s an autistic self-advocacy organization. We do work in community education, political advocacy and community support and community building.
Anne: Yeah, sure. We came up with this idea to get something out there about COVID-19 in plain language, meaning that people can understand it… it’s not full of a lot of technical jargon. And also specifically for autistic people, talking about some of the things that we would specifically be concerned about.
Sothe guidestarts out with talking about what COVID-19 is, explains why we’re sheltering in place or staying at home (as we are here in Ontario) and then it gives some resources for people who use AAC, which [are] alternative communication devices, for people who are non-speaking. It gives some resources for non-speaking people for navigating the medical system and what’s going on, and for having access to communication. And then it talks a little bit about coping, how to connect with people, how to cope what’s going on… and some advice for caregivers. And then a brief discussion about what might happen next because that’s a big question that a lot of people have.
Zosia: Could you describe why plain language is necessary in communications for COVID 19?
Anne: It’s really, really important and we don’t see much of it. I’m actually really surprised with COVID how little communication is coming out of the medical field that could be understood by the average person. A lot of it is really technical and you start looking at all these big words and long paragraphs and it feels very overwhelming and it’s hard to understand. It’s really important in the case of something where it’s about health and safety, to make sure it’s in plain language.
The challenge with plain language is that sometimes plain language guides – if they’re not written by actually disabled people– they can come across as kind of patronizing, right? and talking down to the person. So …people who are autistic, have Downs Syndrome or a variety of intellectual disabilities, [should] really driving these projects, be writing these projects or at the very least at least very heavily consulting and involved with these guides so that they really speak to people in a way that is comfortable.
Zosia: Have there been any other plain language guides circulating? And how does yours differ from those?
Anne: Yeah, there are some good ones. I will say, Harvard (Medical School) did plain language but then they kind of messed it up because they had it like by age group, like “for 5-7 year olds”… like that doesn’t really work, you know, cognition doesn’t break down like grades in school. However, Brandeis [University] did a really nice one. And that could be read by people of any age.
Another great one was written by Green Mountain Self Advocates, and that was actually written by people who are disabled, have intellectual or developmental disabilities, so that was written in a really accessible way. And then there’s our guide. These are the major ones.
And then there are guides by AAC-makers… CoughDrop has a guide, Assistiveware has a lot of good guides and information for people who use AAC to communicate.
Zosia: Do you believe that they methods that the government has used thus far to communicate vital information regarding COVID-19 have been sufficient?
Anne: I think they could do a better job with plain language, especially by consulting with people who understand plain language and know how to write using plain language, and who benefit from plain language.
Zosia: So governmental briefings on Coronavirus have only recently begun using accessibility measures; for example, sign language, the week of March 16. Why do you think the implementation of methods like this were considered later as opposes to quote “traditional” communication?
Anne: I think it’s that way so much of the time that disabled people are an afterthought. I don’t know why especially federally since they made this big statement about how they’re going to start including disability in everything they do, right from the start, so I was surprised at how long it took them because I knew that they have this new commitment, but I haven’t seen a lot of legs to that commitment, and I think there still is more work to be done to reach various disabled communities in the way they communicate.
Zosia: The Accessible Communities Canada Act in its current status primarily refers to federal physical bodies, such as government buildings. Do you feel that language should have been included in the creation of this act?
Anne: It really, really should have. And like any disability accommodation, it would benefit everyone—not just disabled people–if they had included that. The legislation also really didn’t have anything for autistic people and there was no consultation done with autistic people for that legislation, so there are a number of things missing there.
Zosia: Are there methods of communication that the government hasn’t yet implemented that the government would be able to better assist disabled people?
Anne: I think so. They need to communication more directly with disability self-advocacy groups and disability self-advocates and ask what our different communities and individuals need and then respond to that need. I don’t think having a bunch of quote-unquote experts who are non-disabled trying to just do guesswork on the fly in the background as an afterthought is going to be a good way do it. We’d like to see the government reaching out directly to groups like ours and asking us what’s missing and what we need.
And we can provide it, it is very simple for us to do that rather than having them kind of doing guesswork.
Zosia: Do you feel that the accessibility measures regarding communication have been adequately communicated by caregivers to the populations that require them? For example in the blog post you mention there are sound boards specific to COVID 19. Is this a feature that’s widely known to caregivers as a resource?
Anne: I think the companies that make these boards are trying to get the information out there, but I don’t think it’s entirely successful. It all depends on the quality of who’s caring for the person and where the person lives. If they’re living in a residential program where the [carers] are really not making an effort to know what’s going on and what’s available and really querying these things, I don’t think they’re going to find them. This is all happening really ad hoc, by private groups, groups like ours, in the case of AAC it might be a company that makes AAC, but if you don’t use that brand you might never hear about it.
Ideally you would have kind of a Master Post, a master list, that the government had, of accessibility resources and then they would distribute these resources to all of the residential programs and all of the schools, in terms of how they’re doing education now, and they would have a way to get it to parents as well through various agencies, but that’s not happening.
Zosia: And why do you feel that’s not happening?
Anne: I don’t think they have had a plan… I don’t know, I’m just speculating at this point but it doesn’t look like they had thought about these moving pieces when they were getting ready for something like a pandemic. So they need to reach out and ask people in the disability community…. And I mean really [actually] disabled people.
In the case of autism, there is really a whole bunch of non-autistic people who claim to speak for us, groups like CASDA and some of these other …like Autism Speaks. If the Government is going and asking them, they’re going to the wrong people. Those people are not disabled and they don’t know what it’s like to be autistic and they don’t know what autistic people need. [The Government needs] to reach out directly to self-advocates to understand what’s needed.
Zosia: How does the level of recommendations vary when provided by someone such as a representative from Autism Speaks, who doesn’t have autism versus directly from a person with autism?
Anne: Well, we’re asking everyone in the broader disability community not to partner with or work with organizations like Autism Speaks or CASDA because they are…first of all, in the case of Autism Speaks there is the broader issue of the genetic research and some of the eugenics that they support…
But aside from that, they also really follow what’s known as the medical model of disability, where the disabled person is the “problem” and you “fix the child to make them fit” in a world that isn’t built for them. The social model of disability tells us, why don’t we make some changes to the world around us, so that it can fit us? And it’s just the same for autism as it is any disability, right?
I think that these big groups that tend to speak as though we’re broken puzzle pieces that need to be fixed, and “what kind of therapies can we get so we’re not so ‘weird’?” and whatever like, is really damaging to autistic people in many, many ways.
And it doesn’t make for successful outcomes, either. If the Government and policymakers are looking for successful outcomes, the only way you’re going to have that is if we look at autism from the social model of disability and start making changes to the environment. And the only people that can communicate what changes are needed, whether it’s in schools, or healthcare or anywhere else…the only people who are really going to be able to articulate what’s needed are actually autistic people.
Like for example, our group, Autistics for Autistics, goes to the University of Toronto medical school a couple times a year and give a talk to [medical] students on “How can you make your practice accessible” for people who use AAC, for people with sensory issues, communication differences, all of the types of challenges that we have faced when we try to seek health care. We know what the barriers are and we know that there are some really simple solutions. And when we go speak to the med students about how they can make their practice more accessible, they’re very receptive, they’re very open.
It’s really a simple matter of teaching them some really simple accessibility measures that will have an impact on hundreds of people throughout their career. But we’re the only ones doing it… it’s the autistic people who are doing it.
When you have a big organization like Autism Speaks or someone coming in [to med schools], they’re much more likely to talk about “How To Identify Autism” or make us seem like we’re sort of like, a germ in a petri dish rather than “hey, we’re people and it would really help if you would learn about this, it would help if you allow your patients to email for people who are not able to use the phone, things like that. And that all comes from the grassroots, from the disability rights community, not from these big organizations who claim to speak for us.
Zosia: And have these organizations spoken for or released anything in regards to COVID-19 and what are your thoughts on those?
Anne: I’ve been looking and.. now I haven’t seen anything from Autism Speaks because I kinda don’t like looking at what they do, um… because of the eugenics, but I have seen some organizations that have put out guides. Generally, [these groups] are putting out like “A Guide for Caregivers” and then it will be like this massive long document about “How to Talk to Your Child About COVID” um, so, already they’ve taken the subjectivity away from the actually autistic person. They’re not addressing autistic people, they’re addressing their carers, and that’s just symbolic of how they tend to do things.
And I just saw one today, I couldn’t believe it…someone sent it to me, I can’t remember who put it out…it was a Canadian group from the West [edit: It was put out by a Federal Government initiative by the Pacific Family Autism Network, PFAN] and they did this whole big thing, this whole big website… they probably had grant money for it [edit: the PFAN was handed $10 million in federal funds for the website], and they never once mentioned non-speaking, non-verbal autistic people.
They had it all set up for autistic people who could speak, but we know that like 30% of autistic people are either nonspeaking or partially speaking. It’s quite incredible that a big agency like that would just render all those people invisible in their document.
Zosia: And how has the community in Ontario been impacted by the crisis?
Anne: I think it’s been impacted depending on where you live and who you are. So for some people who are living on their own or with roommates, out on their own, they are facing in many, many cases… because poverty is a big problem in our community, facing a lot of economic insecurity and a lot of worry what might happen to their job, a lot of worry about what’s going to happen with Ontario Works, or ODSP [The Ontario Disability Support Program] or some of the other programs that people are receiving… so there is anxiety and uncertainty and fear around the economic part of it.
Then there’s the social isolation which everyone has to deal with but which feels a little bit different, maybe for an autistic person than it would for a neurotypical person. I don’t want to generalize to all autistic people… I think there are some stereotypes out there that we all just want to sit home and pet our cat and we don’t really care that we have to stay home and we’re all “introverts” and that’s not really true, a lot of autistic people are really extroverted and I think anyone, whether you’re autistic or not, is missing the community, missing the routine. But I think from a sensory perspective it can be more difficult being inside, than it might be for someone else.
It can be particularly difficult for people who are living in a group home setting or in a family setting where they’re not happy or not comfortable, or that’s not welcoming to them. I really, really worry about people in those kind of situations where there may have been an opportunity to get out for work or out for school and now they’re home. So there’s that as well.
And then there’s the sense of not knowing what’s coming. Which is something that impacts everyone, but it can be especially frustrating and can really start to lead you down a path of reading and learning and understanding and getting super-duper into understanding COVID to the point where it’s like, “OK, I’ve learned everything possible about COVID, now I need to find ways to decompress. I need to find ways to connect with other people.”
So I guess to summarize: there are economic concerns, there are stress concerns depending on people’s living situations, and then there are sensory and coping concerns that do look and feel different than they do for a lot of neurotypical people.
Zosia: And how is the Government of Ontario dealing with this crisis?
Anne: I’m just giving my opinion as an individual. I was watching a press conference with [Ontario Premier] Doug Ford today and he was kind of being baited by a right wing media [journalist] to make negative comments about [Canadian Prime Minister] Trudeau and he deflected it and he praised Trudeau. And I was really happy to see that like, it does seem like the Government is taking its direction from public health experts, whether they’re federal or provincial so that was really comforting for me.
The fallout when this is all over, I don’t know, economically and socially what kind of impact it’s going to have on our community because so many in our community are already living very low income and on ODSP. That conversation isn’t really happening right now so it is really hard to tell, because it is a Tory government, what the future is going to be like in terms of [supports].
Zosia: And what are your opinions on the fact that the majority of disability support plans across Canada are below the poverty line but with the Bill that’s been proposed, [non-disabled] individuals would be receiving almost twice as much, for example, as recipients of ODSP. How does that proposal impact the level that we’ve set… essentially putting disabled people in poverty for no reason.
Anne: Well, it certainly points out the way that the existing system isn’t fair, the way that people are constantly living on the poverty line and trying to work a little bit, get penalized for that, people who want to live with their partner, or get married obviously are penalized right now under that system? This, for us as activists, is an opportunity for us to raise awareness, to compare the aid that’s being provided by the government [to non-disabled people] to what [disabled people] are getting. It’s a good opportunity to make people aware of the discrepancies and the second-class citizenship that comes from those discrepancies.
Zosia: How can non-disabled people be allies to disabled people during this pandemic?
Anne: I think non-disabled people can be allies to disabled people by giving us a place at the podium. It’s really really important in any kind of project that has to do with COVID at all that disabled people are right there, front and centre. Because we’re in a place right now in Ontario where we have a place for everyone at the hospital, but as we know down in the US they’re rationing care and as we know, sometimes the rationing programs exclude people that are disabled, and are discriminatory.
There’s a lot of worry and concern in Canada that that could happen here depending on the direction that things go with health care and this virus. So, some guarantees and some real commitment that disabled people are not left out in those kind of scenarios and that affirmation that our lives have value is really important. And visibility for autistic people and all disabled people –as much visibility as possible is really important right now. My concern is that disabled people will not be given life-saving medical care in the event that there is rationing and that it will be built into the triage policies at hospitals.
I think what everyone would like to see is an ironclad guarantee in general a positivity about disabled people coming from our government as a way to reassure people that it’s not going to happen here in the way that it has been happening in the US.
Zosia: If listeners wanted more information about your organization, what should they do?