Illustration of people's fists in the air
Bloom Blog

Disabled and parent activists are often at odds. The authors of a new book explore why

By Louise Kinross

Allies and Obstacles examines the tension between disabled activists and parents advocating for their children with disabilities. The authors note that disabled leaders promote disability pride and culture, while parents may be most interested in a cure, or at least in minimizing their child's disability. Disabled activists fight for full inclusion, while some parents lobby to maintain segregated settings. Disabled leaders call for empowering disabled people, while parents want to call the shots on what they perceive to be best for their child, even when that child is an adult. Allison C. Carey is a professor in the Department of Sociology and Anthropology at Shippensburg University in Pennsylvania, and one of the book's three authors. Allies and Obstacles includes case studies to show how activism developed in the areas of intellectual disability, psychiatric disability, autism and physical disability.

BLOOM: Why is this book timely?

Allison C. Carey: First, I think we need to realize that there has been recognition of parent activism and also critiques of that activism, but no one has really tried to bring those two together. As we move forward in building a more integrated society and thinking about how to best empower our kids, we need to think about the roles parents play. The disability rights movement needs all of the allies it can get, but there's a tension between disabled activists and parents. Often parents don't know very much about the disability rights movement, other than the laws they can use. They don't necessarily know disabled activists or about self-advocacy movements.

Also, as we're living through a time of Black Lives Matter and COVID, we need to recognize that some parents have more political capital than others, and have shaped the agenda. Parents don't tend to think of themselves as having power or privilege, but the parents who become leaders in disability policy, in America at least, tend to be white. They tend to want to erase race issues, because they just want to focus on the disability. But by erasing race issues, they erase things like the fact that people with disabilities, especially minorities, are disproportionately killed by police. White parents are fighting for better educational services and that's important, but the better educational services don't necessarily help black youth as much.

There's a big discrepancy in terms of quality of special education in America. For upper class and white kids, special-ed is a route to get accommodations and extra attention. For minority children, it's often a sentence to a dead-end educational route—a segregated back room. Minority youth are also disproportionately labelled disabled, and we want to point out these differences.

Parents are fighting for the best interests of their kids, but some have a lot more political capital than others, and that has advantaged some kids. In bringing forward the voices of people with disabilities we also need to think about how to make sure that the voices of people of colour, of Indigenous people and of LGBT communities are heard.

BLOOM: You note that capitalism and individualism place unique pressures on parents of children with disabilities. 

Allison C. Carey: We're in an economy where there are clear winners and losers. Parents across the board feel this tremendous anxiety about which kids are going to be successful, and then kids with disabilities face more challenges in being successful as we traditionally define it.

Parents worry about whether their child can get a good education and have access to health care and they worry about the job market. This pushes them toward what we call optimization. Parents are trying to get their kids in the right school, with the right lessons, with the right social capital, and part of this is trying to erase or hide disability, rather than acknowledge it. And that's a real tension as we try to decide how much we want to push children toward normalization vs. how much we want to build a positive disability identity. Those paths are really hard to pursue at the same time.

There's an American study where kids with disabilities were asked to talk about what they knew about their disability. And the kids often knew almost nothing about their own disability. What the parents had told them was "You're special," or "You just need to work your hardest and you'll be fine." Or sometimes, if there was an injury or an accident, they had a vague narrative about something that had happened along the way. Sometimes they were told something religious—like "God wanted you to be that way."

What the parents were trying to do was communicate to their kids that they were like everyone else, or maybe special, but in a positive way. But they don't want their kids to necessarily belabour the idea of disability, because they're afraid it will hurt their self-esteem. So they don't give their kids the tools to advocate. Kids get that they're different and they understand where they fit in the social hierarchy, and if you don't give them the vocabulary and tools, then they're left not understanding a part of their identity, and often being ashamed of it. And that can take a long time to unwind, and sometimes it doesn't unwind.

BLOOM: You talk in the book about the growth of mother blame in the late 19th and early 20th century. There was a cultural message that bad mothers created disability, and good mothers erased it by doing what doctors recommended, whether therapies or treatments or child-rearing practices. How does our tendency to blame mothers feed into any tension between disabled activists and parents?

Allison C. Carey: Oh, that's an interesting question. I think parents get hit by medical professionals and activists. On the one hand, they're expected to erase the disability. On the other, disabled activists are expecting mothers, who often don't know anything about disability before their child becomes disabled, to embrace disability, and to know how to build self-advocacy and foster disability pride. So I do think parents get hit from both communities.

However, it's not that simple. When self-advocates blame parents, it's often for really relevant, political opposition, not just some vague 'Oh you're a mom.' It's because the moms have organized and submitted a brief to a court opposing some piece of legislation that fosters integration or de-institutionalization that disability activists have been fighting for. Parents have fought against institutions, but they have also been on the forefront of fighting for institutions.

We all want to put our children first, and make these pragmatic decisions for our children, and there's not necessarily anything wrong with that, except you're drawing on this legacy of activism, but not necessarily understanding it or contributing to it. 

Disabled activists say: 'When are you going to join us? When are you going to figure out that the Individuals with Disabilities Education Act (IDEA) isn't there just for your child, but needs to be protected over and over again, because many states still do not put inclusion first?' It would be great to have parents on board in that broader fight.

I totally get that parents are embroiled in day-to-day survival and it's hard for them, but they do get involved in parent organizations, and they're often not ones that support disabled activists. 

One of my interviewees talked about the inclination parents have when they want to learn about disability to reach out to other parents, and form parent support groups. But while parents have a wealth of a particular kind of knowledge, they don't actually have the knowledge of the lived experience of adults with disabilities, from their perspective. So when parents are looking for information and gathering together and becoming active, they're in these parent bubbles, getting a parent perspective. This interviewee said in the groups it was often about the parents' needs and interests and problems. And that's all valid. But where are the people with disabilities in the conversation?

BLOOM: So the question of claiming a disability identity, and being part of groups that are run by disabled people is one area of contention. You write about inclusion as another thorny issue.

Allison C. Carey: Yes, inclusion spans a lot of different topics. Sheltered workshops are a huge issue right now. National advocacy groups led by people with disabilities tend to be against sheltered workshops. Sheltered workshops don't have to pay minimum wage, and they're presented as training programs, but people rarely move from them into competitive employment. Disabled activists want to see people in competitive jobs.

But some parents say their loved one has friends and supports in a sheltered workshop. They're there all day, they get transportation there and back, and it works. They feel like disabled activists are trying to deconstruct one of the few things that is stable in their child's life. Parents aren't doing it to be against people with disabilities. They're trying to get a situation under constrained circumstances that works for their loved one and family.

Parents like, to some degree, the control that more segregated services offer. They often get more input into those places. The same argument applies to segregated day programs and larger residential facilities and even segregated schools. Parents are looking for expertise, input and control. They're looking for places that are set up for their kids, because they already have to do so much work. They know that without an extraordinary amount of advocacy, schools don't build strong, supported inclusive programs.

Disabled activists who are fighting for inclusion feel undercut by parents who say 'You know what? It's easier for me to have my kid in the special school.'

Another issue we see is involuntary treatment in communities related to mental illness and autism.

Applied Behaviour Analysis (ABA) gets at the issue of medical treatments to try to erase disability. So people with autism will at times talk about their experience with ABA as really enforcing conformity, as emotionally traumatic and gruelling. They say the main thing they were taught was not to 'stim' at any cost. Meanwhile, they weren't learning how to communicate or do other things. They say ABA time came at a loss of other things that might have actually helped their functionality. Disabled activists don't say there should be no treatment, and some ABA can be good. But ABA is unregulated and parents don't always know what it's supposed to look like, and how to determine whether it's causing more harm than good. ABA is becoming increasingly controversial.

BLOOM: You also mentioned guardianship.

Allison C. Carey: These are issues of empowerment. What should guardianship look like and how easy should it be for parents to get guardianship? It used to be really easy for parents to say 'My child has a disability, I'm going to be their guardian.' It's become harder in many states.

In our book we tell the Justice for Jenny story. It's about a woman with intellectual disability who lived independently in the community. Then she got in an accident, and her parents forced her to move into a group home. Jenny allied with The Arc and sued to be allowed to live more independently, and she did win that case. 

What are the parameters around human rights vs. parent or guardian authority?

Sexuality is a really big issue that divides parents and disabled activists. Activists tend to want independent lives and the option to be sexual. Parents tend to perceive sexuality primarily from a risk paradigm. Research shows that even though group homes say 'We support the human rights of our consumers, and people have a right to sexuality,' parents can come in and say 'My child is not allowed to date, and if they do, I'll move them to another service provider,' and the parent can take sexuality off the table forever for somebody.

The policies and training for direct care staff are really unclear. They know they're supposed to be supporting people in human rights, but they don't know what that means. Does that mean I let someone have sex in their bedroom with someone who's not a known factor? Do we get to interview people before they come in? How does that work? 

We tend to spend a lot of time and energy on policy that focuses on how we make people independent and productive, through school and work and assistive technology. But sexuality is not a big policy focus at all. Policy makers don't see the need for it, there's no profit from it, and only disabled activists are fighting to talk about it.

In our book, we talk about how parent authority and autonomy are the two defining features of parent activism. While some parents ally with self-advocates, parent activism is really about parents wanting to retain the authority to determine the services for their child. When it gets into adult children, they want to determine the values their child will live under.

BLOOM: Can you talk a bit more about what parent activism looks like?

Allison C. Carey: What we argue in the book is that parents are super diverse. Some are just fighting for specific things for their kids, for example, to have augmentative communication in the classroom. Some parents really ally with the disability community, but then, they're just seen as allies of the disability community.

What underlies the activities of something we call the parents' movement is that these parent activists want to be able to make the choices. They want to retain authority and autonomy. You can see this to some degree in the way organizations are set up. For example, Autism Speaks only has one or two people with disabilities on their board, and it's a large board. 

The Arc has done a much better job of incorporating self-advocates, but it's also experienced a lot of internal tensions as to who their constituency is. Is their primary role safeguarding the human rights of people with intellectual and developmental disabilities? Or is their primary goal advocating for the interests of parents, who are their main constituency? They will say things like 'We think that people should have competitive employment, ' but the local Arcs run sheltered workshops.

BLOOM: In your book, you talk about three key tenets of activism by disabled people: they support the social model of disability, not the medical model; they advocate for full inclusion; and they believe disabled people must lead the movement. Can you give an example where disabled activists felt a parent organization didn't live up to these ideals?

Allison C. Carey: Probably the two parent organizations that are most criticized are Autism Speaks and A Voice of Reason (VOR). VOR were largely parents who branched away from The Arc when The Arc started pursuing de-institutionalization. They fight expressly for large-scale residential service placement, as well as separate schools and large day centres. They argue that parents should have a full array of choices.

Disability activists argue that choice doesn't mean you can take away human rights when there's no need for large residential services, and when evidence shows people with developmental disabilities can, and do, thrive better in smaller community settings. They also argue that the state has no obligation to fund services for parents that violate the human rights of people with disabilities. These groups have really gone toe to toe several times. 

In the Olmstead Decision, where two women wanted out of an institution and they sued, it was argued that keeping people in an institution when they could be served in the community violated the ADA. But VOR fought against that, and they managed to tweak the wording to say unnecessary institutionalization is a violation, but parents, guardians and doctors can determine that there is necessary institutionalization. So parents continued to exercise some degree of power to refuse to transition adults in institutions into community settings, and they slowed down the process of de-institutionalization since the 1990s in the U.S.

BLOOM: I guess Autism Speaks' early focus on cure has been problematic.

Allison C. Carey: It is really problematic to disabled activists, but even more than that, to get the attention and funding they needed to pursue medical research, they have led campaigns that have been very stigmatizing to autism. Disabled activists have argued that rather than helping people, they led the way in stigmatizing autism, suggesting it was a dangerous thing and needs to be cured so that you can get your real child back. Autism Speaks has paired autism with things like AIDS and cancer, and it doesn't typically fight for services and accessibility for autistic adults.

BLOOM: Do you suggest a way that parents and disabled activists could better work together?

Allison C. Carey: We don't have a cheat sheet that says here's your list of how to do this. I think there are two primary things. One is to join self advocacy groups—not to control them, but to support self-advocates and see what they're fighting for and what their perspectives are, and to be able to build those bridges for your child as they grow up, so they know adults with their disability. 

The second thing is within parent organizations, to look at those issues of inclusion, empowerment and the social model of disability. For example, I serve on a local board of directors of The Arc. I was asked to be there in a professional capacity, but I'm a sibling, and I was surprised that the board was completely made up of professionals. There was a sense that parents and self-advocates had a conflict of interest. But that's not The ARC philosophy and its guidelines recommend chapter boards have people with disabilities and parents, so I told them: 'We need to find some.'

We need to give people a real voice and empowerment within the systems, because parents do control so much of the service system. Parent organizations exert a lot of power when we're talking about disability policy. Parents need to start sharing some of the power. 

BLOOM: How can health professionals use the book to inform the way they work with children and families?

Allison C. Carey: That's an interesting question. Health providers, just simply by their professional training, tend to come from the medical model. So when parents are new to disability, their first encounters are with health professionals who give them that medical model perspective. It's really important that health professionals learn about the social model, and learn about the idea that disability identity can be positive thing. They play a really important role in socializing parents, and often in a way that disability activists find problematic. They need to think about their language, and perhaps have disabled adults who come in to talk to parents, or have resources from advocacy groups. When working with children, they could think about how one creates both optimal function at the same time as disability pride. 

There's a gal who does research on physical therapy and folks who have spinal-cord injury and she talks about becoming 'enwheeled.' The physical therapy isn't just about the technicality of using the wheelchair, it's about incorporating the wheelchair into your identity. So you're this bad-ass, cool person in a cool wheelchair and you know how to use it to dance, and it's not just an ugly, grey piece of equipment.

BLOOM: I think you're talking about an essay in a book edited by our researcher Barbara Gibson. The book is called Rethinking Rehabilitation. That essay talks about how for people with acquired disability, the wheelchair becomes an extended part of their body. You have a sibling with a disability. Did researching this book help you better understand your own family?

Allison C. Carey: My sister was born in 1970 with an intellectual disability, right before Nixon announced de-institutionalization as a federal policy in 1971. My mom was very much an activist. So I've seen fierce activism, fierce paternalism. I have seen things that I thought were really admirable in decisions, and decisions I thought were more questionable.

Siblings occupy this interesting position between the parents and the person with a disability, and kind of see both perspectives. One of my co-authors, Pam Block, is also a sibling. It's not surprising that both of us come at this, on the one hand, wanting to validate both perspectives, but on the other, coming down on the side that people with disabilities need to be empowered and have human rights. Those things need to be protected, although parents may not agree.