I’ve been reflecting a lot recently on what it means to identify as disabled.
Disability is a social construct in many ways, and the social model of disability argues that structural problems (and social expectations) are a root cause of disability. I would argue also that disability is an individual identity. A disability identity something that has helped me make sense of multiple complicated and difficult situations (but I believe it is relevant even in a simpler situation, disability is not by any means a synonym for difficult). It can provide guidance for things such as self-advocacy, education planning, and the use of assistive technologies.
For example, a disability identity might give someone a way to think about the school or work environment in terms of how it can better meet their needs. Accessible technology is part of the solution, but so are modified exam formats that provide an equal footing in measuring knowledge; or the ability to rest when needed (and to have access to quiet, restful spaces). These and other similar choices can have a big impact on inclusion. Yet we still cannot count on administrators remembering this, and people with disabilities and their allies face many small battles all the time to ensure equity along these fronts. When someone says (as I have heard recently) ‘people should go home to sleep’ or ‘we’ll just test this child using the same method as other children so we can see where they stand’ they are advocating for equality rather than equity, for measuring impairment rather than disability.
A disability identity can also suggest the need for political action. This can include volunteer work, protest, advocacy, and more. It gives people permission to go beyond the status quo, to not accept a situation that excludes them or takes away their control or impacts their safety. Instead, they are empowered to ask why this is happening, and how it can change.
A disability identity can also be a guide in personal action. For example, when I was going up for tenure, I sat down with as many potential letter writers as I could to talk about a very important concept in disability: Disclosure. About half of the people I talked to were surprised we were having a conversation about this because they knew and understood that it was neither legal (in many circumstances) nor appropriate (ever) to disclose my disability in any letter they wrote for me without my permission. About half were surprised that I brought the topic up, or even offended, because they had believed they would be helping me by writing about all that I had overcome on my way to tenure. To be clear, I asked all of them not to disclose, and that should always be the default, unless you have explicit permission to say something.
Relatedly, a disability identity highlights where and how we can improve smaller individual interactions by emphasizing the importance of respect and agency. As such, it suggests
- The difference between being curious (an important way to understand the world) and questioning whether something is needed/laughing (even good-naturedly) about it (which can be invalidating)
- The value of checking in (asking how someone is doing, or if something is ok) rather than assuming (saying that “you seem fine today, that’s great”, for example) or avoiding (talking about someone rather than to them for example) –
- The importance of giving space. Sometimes it is better to let someone decide when to talk about things rather than pushing for information or constantly asking.
- The importance of trust. It is so important never to accuse someone of using their situation to get something they want. It is also important not to assume someone can’t do something just because they look a certain way or have a certain impairment.
- The importance of acceptance . Letting someone navigate in their own way and not bombarding them with expectations and questions
A disability identity might also change how we approach a research project. In my class on accessibility this quarter, we have frequently asked the question: How would a disability identity change this project. The answer often lies in the questions we ask of a work. For example, we asked — How does this project increase the agency and control of the person it serves? Who does it include and exclude and in what ways? Were people with disabilities used in the project, or were they partners, or even leaders? Should they be authors of this paper? What happened to them after the project ended?
I want to highlight some differences between these questions and the ones immediately obvious from a social model perspective. That suggests questions such as: How does this work tear down structural barriers that they might be facing? Does this work question the status quo or hold it up? What is the context in which this work was done, and what happened after the project ended? These are also important questions, but they cover different ground.
What has fascinated me when talking about these issues with others is the level to which they can be confusing, confounding, confidence-chilling concepts for people without a disability. If you are uncertain what you can say to someone, or feel attacked when people ask for change, keep in mind that you might be missing important perspective, or that the work of educating others about disability might involve a broad brush that catches you up in it even if you are doing the right thing.
Finally, I’ll note that disability identity can also be empowering. If you have a disability, and have not thought of yourself in those terms, or considered those possibilities, it can be interesting to introspect about them. Ask yourself what a disability identity might give you. It does not need to define you, but it might still be part of you.