Family are not primary sources

The two groups that are likely the most invested in the happiness and security of disabled people are the communities of disabled people and the parents of disabled people. (And of course, there are overlaps, with some disabled adults who are parents.) The groups would seem to be natural allies. Many advances in inclusion and integration were first conceived of and fought for by parents of disabled children, such as opening public schools to disabled students.

While the perspectives of parents are valuable and important in the disability-rights movement, though, those perspectives are perhaps too important to the media. The priorities of parents of disabled children and the priorities of disabled adults are often not in sync and are sometimes even in direct opposition. In general terms, the priorities of families tend to be about safety, protection and stability, and on finding a way for the disabled child to live within the family.

The priorities of families also often reflect what’s known as normalization: typically, disabled children are given therapies with the goal of getting the child to be “normal” or as close to normal as possible. For example, the goal of physiotherapy for a child who cannot walk is for the child to walk. Even when this goal is acknowledged by all involved, including the child, to be unrealistic and or impossible, physiotherapy attempts to get as close as possible to that goal, thus leaving many children set up to fail before they even start, or more accurately, acutely aware that any and every attempt they make will be a failure no matter how hard they try. Speech therapy, likewise, tries to get the child to speak “normally.”

In the autistic community, treatment options are a huge source of controversy. Applied behaviour analysis (ABA) focuses on extinguishing “autistic” behaviours and “rewarding” or “reinforcing” behaviours considered more socially appropriate or typical.

ABA is considered one of the most successful treatment options — at least by some. Many people credit ABA with helping them or their child speak for the first time, maintain friendships with others, or participate in education. They think it’s a good way to teach social skills and to normalize autistic children, and that it will set them up for a better life.

However, ABA has its critics. And many autistic adults have called ABA and other therapies like it abusive because their aim is to make people appear less autistic instead of making things easier internally for the autistic person.

This is relevant to our discussion of sources because when we talk about “autism funding,” we’re invariably talking about ABA. ABA is what is primarily available in special-education classrooms and the services offered through the school system. In Ontario, if families with autistic children don’t want the child exposed to ABA, homeschooling is effectively their only option.

Parents who are pro-ABA and those who support a “cure” for autism, though, have a much bigger microphone and are usually seen as more reliable sources than those who don’t want ABA. Parents who are pro-ABA often frame autistic adults as activists, as a fringe group, or as too high-functioning to speak for families like theirs. Their children are unable to speak, and the experiences of higher-functioning autistic people therefore aren’t representative of their experiences.[1]

It is not our place as journalists to decide the merits of ABA. That’s the place of advocates, professionals, researchers, families and, most of all, autistic people themselves. But the fact that coverage of autism funding usually fails to mention that the fundamental plank of autism therapy is deeply controversial within the community of disabled people is our problem. In order to have balanced coverage of autism therapy and funding, we need to at least acknowledge this debate and speak to those who can give additional context. If we don’t, we are not informing the public of the whole truth.

As well, when considering the differences between the families of disabled people and disabled people themselves, it’s important to realize that there is often also a tension between risk versus independence, or safety and protection versus freedom. Many parents prefer a “safe environment,” one that is more controlled, for their children, and will prioritize safety — or what is perceived as safety — over independence or what is perceived as such. They will also prioritize family over establishing an independent life. This is not necessarily because the parents don’t want their children to have an independent life; possibly they cannot conceive of it, or see other options for care as abusive. This is where the concept of dignity of risk comes in (see Glossary.)

It’s also important to remember that having a disabled child who is raised as part of the family unit is a relatively new phenomenon — or perhaps it would be more accurate to say, an old one coming back into prominence. The asylums and other institutions that often housed disabled people from cradle (or soon after) to grave were once considered progressive and humane, revolutionary models of care. When the alternative had been jail or a life on the streets, anxious parents were told that “putting the children away” was best not only for the disabled child but also for the good of the other children the family already had or could have in the future. Often the parents were encouraged to have no contact with their institutionalized children and “forget about them.” In this new era, it makes sense that parents would want to hold on tighter to their disabled children as part of the families when the fight to get kids home — or keep them at home — is still in living memory.

Here in Ontario, we disabled people have the right to an independent life as adults because of Matthew Justin Clark. Clark’s dad didn’t want to sign a permission slip for Clark to go on an outing, fearing that his profoundly disabled son could easily get hurt. That seems like the action of a loving and protective dad, maybe. Perhaps Clark’s dad was an overprotective dad, or perhaps just protective enough, depending on the child in question, right? Certainly, the dad is sympathetic, maybe misguided, but after all, parents know their children best, right?

But what if I told you that Clark was 18 years old at the time of the outing? And what if I told you that his father was still considered Clark’s legal guardian, but that this arrangement consisted only of a de facto assumption — Clark’s dad had never gone to court to seek guardianship of his son nor established a need to do so in the first place? And what if I told you that Clark’s family had abandoned him as an infant and he did not meet his father, mother and siblings until he faced them in court at age 20, where his parents were trying to get him declared mentally incompetent so that they could force him to remain in the Rideau Regional Centre rather than Clark moving to a group home with friends, as he had planned?[2]

Clark had severe cerebral palsy, was non-speaking, and used a board with symbols to communicate. Because he could neither speak nor walk, he had been assumed to be unintelligent, but as soon as he had access to a communication support that worked for him, it was clear that that was not the case. Staff at the Rideau Regional Centre supported Clark’s bid for freedom and talked at the trial about how Clark needed a better education than they could provide at the centre. The centre’s staff said that, with Clark’s brightness, curiosity and kindness, he would be greatly missed at the centre, and he would be welcome back at any time, but they believed he was capable of finding what a more-independent lifestyle could offer him. These staff members were the ones who raised Clark from age two, after Clark’s family of origin followed the medical advice of the time to have no contact with him[3].

After Clark’s dad denied permission for the outing, Clark realized that technically his father didn’t have the right to tell him no: Clark was of age and guardianship had never been established. Clark had been striking up a friendship with some volunteers who worked at a L’Arche community nearby, and they had been the ones to invite him on the outing in the first place. Thus, Clark began making his plans to move out of the institutional setting. His family sued him to prevent his friends from helping this to happen, claiming that Clark lacked the capacity to make his own choices. At trial, Clark’s capacity to communicate was at issue. Experts hired by his parents claimed that he did not understand the communication that they had with him. An example they gave was the difference between a tap and a faucet. Thankfully the judge did not find this compelling, saying that someone in Clark’s circumstances, who had lived in an institution for nearly all his life, would have no reason to be able to distinguish between a tap and a faucet, or to know which word was appropriate. The judge found Clark to be mentally competent.

Following that court decision, Clark lived in various supportive living arrangements in Ottawa until his death. When he was asked what he wanted to do with his new freedom, he replied that his first priority was to build a relationship with his family of origin, including his father. These became among the most important relationships of his life.[4]

Thankfully, the vast majority of parents of disabled children today do not subscribe to the Clark family’s model of child-rearing, and their goals generally align with the goals of most parents —they wish to see their children have a happy life as part of their own family and their extended family of origin. Like many parents, parents of disabled kids sometimes have a hard time recognizing when their children have grown up. However, most parents are gently encouraged in this by their friends and family — and not so gently encouraged in it by the children themselves — and so eventually they come to a sort of equilibrium about the matter.

Unfortunately, parents who have disabled children are strongly encouraged in their delusions about disabled adults by the media, who rush to declare someone “a child in an adult’s body,” unable to do things for themselves, unable to make decisions about their lives and unable to tell if someone is trustworthy, and those assertions are rarely if ever held up to scrutiny.

Even in cases of murder of disabled people, where the murderer was the parent, these assertions are rarely held up to scrutiny. (And the same is true in cases of murder when the murderer was a nurse, and the nurse had been a person of interest in a suspicious case like this before but was allowed to get away with murdering people because nurses and caregivers are “heroes” and she was “probably just burnt out.” Yes, I am talking about Elizabeth Wettlaufer — subjects out of scope here but to address at another time.) And the same is true even in cases of murder when the conviction is upheld on appeal in multiple courts including the Supreme Court of Canada, and even when the murdering parent subsequently used his expertise at child murdering to become an advocate for physician-assisted dying, and his expertise as an advocate of same is neither challenged nor discredited. (Yes, I am talking about Robert Latimer.)

One would think that advocates of physician-assisted dying would wish to distance themselves from a non-physician who murdered a minor child who was not capable of giving consent without the assistance of any physician whatsoever. But instead Latimer has been welcomed into the physician-assisted dying advocacy movement and has been granted legitimacy in his advocacy by various media appearances on pretty much every mainstream outlet in the country over decades. Objections from disabled people to his presence are dismissed as discounting Latimer’s “love” for the child he murdered and despite the murder conviction being upheld multiple times.

The objections are dismissed because, apparently, the experience of raising disabled children, and caring for disabled adults, is considered to be so traumatizing, so horrendous and so all-consuming that any behaviour is excused even if it is violence toward one’s own children.[5]

Thinking back to Matthew Justin Clark, Clark’s father, who did not stoop to murder, and who claimed that he thought he was doing the right thing, was given the benefit of the doubt in that he claimed to be seeking what was best for his son. But Clark’s father did not bother to see his son during his institutionalizaton at the Rideau Regional Centre, and until they faced each other in court years later. And it was so commonplace, so ordinary, for such a man to claim that he had moral and legal authority over the life of another man, that there then had to be a court case about it because parents’ love is seen as paramount. I would not have liked being the recipient of such love. I don’t think you would have either.

Returning to Robert Latimer, he is given a pass for having murdered his child because he loved her. Those who object to Latimer’s presence as a national media commentator on assisted dying, and those who thought that he should have been given a harsher sentence more in line with sentencing for other murders of children or other intentional, premeditated killings (something which usually results in a first-degree murder conviction, and in Latimer’s case was only considered a second-degree murder conviction) are seen as a doubting Latimer’s love for his child.

Perhaps Latimer did indeed love his child, Tracy Latimer. He certainly claimed to do so and to have been acting out of love. There is no reason to necessarily doubt the statement. That being said, in cases of murders of non-disabled people, their murderers often claim to love them as well. This is still considered murder. Personally, I don’t think it’s relevant whether Robert Latimer loved his daughter or not, or whether the murder was motivated by love. As the amazing character of Jake Peralta says on Brooklyn Nine-Nine, “Cool motive. Still murder.” A biography of Latimer by Gary Bauslaugh, Robert Latimer: A Story of Justice and Mercy, makes the assertion many times that “Latimer is not a criminal.” For Bauslaugh, that means that Latimer should not have been incarcerated, should not still carry a criminal record, and should not face any of the other consequences that convicted murderers face upon re-entering society. According to Bauslaugh, Gary Bauslaugh has a better idea of who is and is not a criminal than the Supreme Court of Canada.[6]

In another case of filicide, in the United States, Gigi Jordan’s alleged murder of her son Jude Mirra, is often used as an example of the dangers of believing in a method of communication known as “facilitated communication.” In facilitated communication, an assistant helps someone with communication difficulties point to letters on a board. However, there have been many studies that show that, at least in the case of autistic people, whose communication deficits are located in the brain, this pointing is actually subconsciously driven by the facilitator[7]. This is a manifestation of the ideomotor effect. Jordan allegedly believed that her eight-year-old autistic son was asking her with facilitated communication to kill him so that he could be free of the abuse from another figure in his life (who, she alleged, was also abusing her). Allegedly, at her son’s prompting, she fed him sleeping pills and other medicines until he died. She eventually took her own life.

This story is tragic no matter how you look at it, and detractors of facilitated communication are right to point to it as a worst-case scenario. At the trial what was at issue was whether or not Jordan truly believed her son was asking to be killed. However, nobody seemed to talk about the fact that, even if Jordan did believe this, and even if Jude really was asking his mother to kill him, any other eight-year-old child going to their mother and saying they wanted to die would be immediately transported to psychiatric care, not encouraged in this and aided by their mother. Why are murderers of disabled children so often portrayed as tragic figures and the murder of a disabled child by a parent seen as a mission of mercy?

Disabled people are more likely than others to be victims of violent crime[8]. And disabled people are more likely to experience intimate partner violence. Many disabled people are trapped in a situation where they are forced to rely on their partner for every need because to be married or in a domestic partnership confers a presumption that the non-disabled partner will “take care of” the partner with a disability, and therefore the government does not need to provide the person with the disability with an income of their own. This means that many disabled people do not marry able-bodied people, and the ones who do are forced by law to rely on their partner for every financial need, which makes it more difficult to escape an abusive situation should one occur[9].

If a disabled person does try to leave an abusive partner, they likely face a shelter system that is not accessible for their needs and have a hard time finding housing or other services that meet their needs[10]. Those partners who do abuse disabled partners are often given the benefit of the doubt, based on the following assumptions and beliefs: “The abusive partner has partnered with the disabled person in the first place, and anyone who would sign up for that is a saint.” If the disabled partner goes to others for help, the disabled partner is likely to be told that they’re lucky to have a partner in the first place — “maybe they should try to be less of a burden.” “The abusive behaviour probably wasn’t on purpose. They were just burnt out, and anyone would be stressed in their position,” they say.

Disabled people who are victims of crime including intimate partner violence are less likely to be believed because of their disabilities. They are likely to be seen as less credible and the violence against them seen as less traumatizing. People make excuses for perpetrators of crimes against disabled people. If a disabled person is in an abusive marriage and has children, the custody of children is likely to be awarded to the abuser rather than the disabled person. In family law, a disabled person is less likely than a non-disabled person to get custody of their children regardless[11]. In some US states, disability of a parent is listed as a criteria for removal from the family in and of itself.

When disabled people are murdered or assaulted, media reports of these crimes tend to fall into the victim-blaming narratives and to make “heroes” of the loved ones who murder and assault. As David M. Perry notes in the Ruderman Family Foundation white paper “On Media Coverage of the Murder of People with Disabilities by Caregivers, in the aftermath of such incidents, journalists often rush in to defend or excuse the murderers.”[12,13]

As we explore later, loved ones, family and caregivers are not always trustworthy sources; they need to be scrutinized, and interviews present an opportunity to do that (see Interviews, Caregivers are not heroes).