It seems to me that if you want to find people online who have experience with disability there are two dominant groups: disabled individuals and parents of disabled children.*
There have been many very kind and compassionate parents and disabled individuals I’ve met, and I have learned a lot about disability from them—“disability” here referring to the entire constellation of experiences and ideas that constitute something like a culture of disability. However, one might get the impression that these two groups represent the full scope of life with or as a disabled person. Occasionally there will be some attention given to paid caregivers, and, depending on which group you ask, mixed feelings about their role. But on the whole, those two groups are the totality of disability discourse online.
Missing from every conversation I’ve had in person or online, every podcast I’ve listened to, book or article I’ve read, is the perspective of a group of people I know must exist despite their absence in these spaces: nondisabled siblings who both grew up with a disabled brother or sister and who continue to care for them in adulthood. This group has, I think, a unique and undervalued perspective, being both a giver of care and only knowing a life with disability.
There is, in my experience, often tension between the two dominant groups. This tension can be explained, in part, by the fact that the overwhelming majority of individuals with disabilities active online are not intellectually or developmentally disabled; the inverse is true for the parents active online: the overwhelming majority of their children are intellectually or developmentally disabled. Which is to say, the lived experience of each group is looking at disability from different and incomplete perspectives. The experience of disabled individuals is not the entirety of the disabled experience; the experience of parents of disabled children is not the entirety of the disabled experience. And even if you were to combine these experiences there would still be something left out.
I think a helpful way to frame this tension as I see it is to consider what Tyson Yunkaporta said in a recent interview concerning the shift in certain activist circles away from changing material conditions to changing perceptions.
“We used to fight to change conditions, now we fight to change perception.”
While Yunkaporta is speaking more broadly I do think using this framing captures something true about the dynamic between disabled individuals and parents of intellectually disabled children.
One the one hand, much of the work done by disabled activists is aimed at dismantling the ableist structures that exist, the actual physical stuff that prevents many disabled individuals from living their lives and doing all the things nondisabled people do without hesitation. In my experience, there isn’t as much attention paid to the ways nondisabled people perceive disabled people. The focus is on the lived reality, the material conditions of people with disabilities because that is where equality and justice is enacted. Put those conditions in place first and the change in perception will follow. But if it doesn’t, no matter, because justice isn’t found in perceptions but in conditions.
On the other hand, parents of children with developmental/intellectual disabilities seem primarily focused on changing perceptions rather than material conditions. It should come as no surprise that the stigma surrounding people with disabilities is powerful and incredibly difficult to overcome—if at all. This type of prejudice is so ingrained in our culture, our language, our religion, politics, philosophy, science, etc., that it’s impossible to escape its effects. So much of our society is built on a foundation of ableism, on a particular perception of what it means to be human. It is only natural that one would want to begin by changing the way we conceive of human ability, dependence, and even cognition. Change our understanding, our perception, and new possibilities for better conditions emerge.
Of course these are gross oversimplifications. These perspectives are not mutually exclusive and inform each other. But they represent two approaches that exemplify the dominant online discourse surrounding disability.
There are, however, some uncomfortable truths I see both sides avoiding. These truths seem obvious to me, a nondisabled sibling who cares and has cared for their developmentally, intellectually, and physically disabled brother.
Many—if not all—of the disabled activists arguing first and foremost for a change in material conditions use the social model of disability. Briefly put,
The social model of disability says that disability is caused by the way society is organized, rather than by a person’s impairment or difference. In this model, it isn’t the individual who is disabled, but it is society that is dis-abling. Under this model, there is a difference between impairment and disability. An impairment (such as blindness or paraplegia) is only a disability if the organizing structures of society prevent the individual from participating fully and equally in society.
This is an extraordinarily beneficial way of understanding disability but it has its limitations. Namely, when it comes to intellectual or developmental disabilities. If a wheelchair user had no obstacles to their mobility or access then, under the social model, an argument could be made that the disability ceases to exert any force. It has effectively been neutralized by the restructuring of the material conditions in the environment. The disabling condition would still be present, however, but because conditions have changed the disabling condition would no longer be a disability.
However, there are no changes in the material conditions that would ever make intellectual disabilities—the disabling condition—not a disability. This is the biggest fault I find with the social model: while it address the material conditions of physical disability it cannot address the material conditions of intellectual disability. Put differently, intellectual disability will always be a disabling condition and a disability; addressing material conditions alone is insufficient for caring for people with intellectual disabilities.
This is obvious to anyone who has cared for someone with an intellectual or developmental disability. But it is difficult to appreciate unless you are in, or have been in, that position. I also have a sense that there is even a touch of ableism within the disability community, where physically or non-intellectually disabled people act with discrimination towards those people with intellectual or developmental disabilities. But that’s a topic for another day.
On the other side, parents of intellectually disabled children, often in a well-meaning attempt to give meaning to their experiences and create value for their child, overemphasize the need for changing attitudes and perceptions. The grueling labor of caring for an intellectually disabled child is unimaginably difficult, and it is important to find or create meaning and value where you can. However, this can lead to infantilizing people with disabilities or turning their child into inspiration porn.
I also believe that most parents are genuine when they say that caring for their child, despite the difficulties, has enriched their lives and changed their perspectives on many things. It seems only natural that they would want to help change other people’s perceptions and attitudes about disability. However, changing one’s perception of disabled people often does more for the nondisabled person than the disabled one. The efforts to alter attitudes and perceptions caters to the needs and discomforts of the nondisabled, often at the expense of the dignity and respect of disabled people.
I am guilty catering to the nondisabled myself. I have made much of the idea that disabling conditions are something that touches everyone, that everyone is limited in some way, and that it is more likely than not that each and every one of us will once again be disabled (like we very much were at our birth). The idea that, somehow, addressing our perceptions on limitations and ability in this way will actually help people with disabilities change their material conditions seems naive to me now. If I believed it at some point in the past, I no longer do now.
I have been trying to find other people like me, people who grew up caring for—and continue to care for—their disabled siblings. This is partly because it is a lonely endeavor, one that not many people have experienced or understand. It encourages, I think, a way of looking at disability (and the world) that is different from both parents of disabled children and disabled individuals. I am committed to changing the material conditions of my brother’s life; if I weren’t committed to changing his conditions I wouldn’t continue to do the labor of caring for him. I am also committed to changing the perceptions of and attitudes towards people with intellectual disabilities and the people who care for them; if I weren’t committed to changing perceptions I wouldn’t bother taking the very little time and energy I have to write something about it.
But somehow I sense that there is still something missing, that there is more to this work than changing perceptions and/or conditions, and even that the dichotomy between those two is missing something fundamental about the experience of disability and care. I’m not sure yet what that is exactly, though it’s something I hope to write more about.
My experiences of disability are very different from disabled individuals, and as a result my perspectives on how and what conditions need changing is very different. Similarly, my experiences of disability are very different from parent caregivers, and my perspective on why and in what way perceptions need to shift is also very different. So in the meantime I’m looking for people in similar situations and with similar experiences, because I think our perspectives are really needed not just in online spaces, but more broadly too.
If you are someone who cares for a disabled sibling, or know someone who does, please send them my way.
*I will be using person-first and disability-first language interchangeably; it seems that each group has their own preferences and each individual within that group also has their own preferences. I was taught to use person first language, but I understand this isn’t everyone’s preference.
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[…] genuine care work is no easy task, but finding those who are also siblings is nearly impossible. As I’ve said before, it’s easier to find information and support if you yourself are disabled or if you are the […]