How you cope with a disability is one thing. How you decide to present or reveal your disability to others is something else. It’s important for disabled and non-disabled people alike to understand both whether and how different people with disabilities choose to identify as disabled – and why.
In a practical sense of course, disabilities impose themselves on those of us who have them, whether or not we reveal or fully accept them. But most people with disabilities have at least some choice in how they process them – including whether or not to identify openly as disabled. Some of us choose to make our disabilities an important part of our lives and social identity. For others, disability is something to be fought and defeated, or at most minimally tolerated, but otherwise denied and distanced.
Some disabilities are very apparent. They announce themselves, to you and to others, and you simply can’t avoid being seen and understood as disabled. For example:
- If you use a wheelchair, crutches, or a cane,
- If you have obvious difficulty walking or doing ordinary tasks,
- If you are noticeably blind, deaf, or speech impaired,
- If you have significant age-related physical or cognitive impairments,
- If you look or act “different” enough to raise questions about whether you might have a disability or some such condition.
On the other hand, some disabilities aren’t obvious to others. Some are almost invisible. For instance:
- Some kinds of chronic pain or illness,
- Learning disabilities,
- Autism and certain other neurological conditions,
- Mental health conditions like depression, OCD, or PTSD.
These disabilities can present you with a choice. Do you identify yourself as having a disability? Or, do you steer away from it and try to avoid being seen or perceived as disabled?
There are valid reasons for both approaches. Here are some of the factors that cause people with disabilities to avoid identifying as disabled:
A belief that disability is only a state of mind.
This is an appealing philosophy that some disabled people hold – that you’re only really disabled if you yourself allow yourself to be defined that way. These beliefs tend to be on a sliding scale between literally denying your disability, or rejecting the entire concept of disability – and a more abstract mindset that acknowledges difficulties, but refuses to accept the supposedly negative “label” of disability. Either way, it’s all related to the idea that each of us has the power to define ourselves, regardless of how others see us. A way this is empowering. But at the same time, it implies that if you do identify as disabled, you are giving in to adversity, admitting defeat, and defining yourself as a helpless victim. If you don’t think of yourself as disabled you won’t be disabled. If you are disabled, then it’s because you have decided to be so.
Identifying as disabled makes discrimination more likely.
Identifying as disabled can have practical implications too. You can literally lose material opportunities, like education or jobs, if you reveal and specify a disability. Disability rights laws like the Individuals with Disabilities Education Act, (IDEA), and the Americans with Disabilities Act, (ADA), provide some protection. But the fact that these laws exist underscores the persistence and power of disability discrimination. Even personal friendships and relationships can be changed or lost if you “come out” as disabled. Some people just can’t cope with disability, even in family, friends or loved ones.
There are material, practical, and interpersonal risks to revealing a disability – especially for those with less visible impairments, who may have the ability to keep it a secret instead.
Disability is socially stigmatizing.
People may think less of you if you identify as disabled, because they have negative views of disabilities themselves. This can include general discomfort and embarrassment, low expectations, and sometimes a very deep and intense fear of someday becoming disabled themselves.
Some people also think it’s bad to identify as disabled, a negative character trait. They may think that publicly and explicitly acknowledging your disability is a sign of weakness, an excuse for laziness, or a dishonest attempt to gain benefits and special advantages.
Given how pervasive harmful ableism still is, these are all more or less rational reasons to distance yourself from the idea of disability, even if you undeniably have one. But there are advantages to identifying as disabled as well.
You can’t get disability help if you don’t explain your disability.
To get protection or an individual accommodation under laws like the ADA, you usually have to say that you have some kind of a disability. To get government disability benefits like SSI or SSDI, you have to further and prove a qualifying disability, with exhaustive details and medical documentation. Even informally, with family and friends, if you need some kind of help to deal with your disability, at some point you will probably have to own the idea that you have one.
Keeping your disability to yourself or denying its reality is your right. But asserting that right can cut you off from important opportunities and other rights you may need to assert. For better or worse, decisively identifying as disabled can open doors that are otherwise closed to people with disabilities. In some situations it can even be essential to survival.
Disability communities can be a source of help and support.
One of the most common ways people with disabilities avoid identifying as disabled is to deliberately steer clear of associating with other disabled people. But connecting and sharing experiences with at least some other disabled people can be helpful and enormously rewarding.
Connecting with disability nonprofits, like your local Center for Independent Living, or national organizations like the American Association of People with Disabilities can also provide opportunities to team up and work for substantive changes to make life better for people with disabilities. And social media also offers tremendous opportunities to connect personally, trade advice and support, and contribute to disability activism.
Distancing yourself from other disabled people may seem like a good way to overcome disability and achieve mainstream inclusion. But cutting yourself off from fellow disabled people comes at a cost.
Clearly identifying as disabled can be a relief.
Struggling to ignore, overcome, or reject a disability you deal with every day will sooner or later create unsustainable inner conflicts. Most disabled people eventually come to realize that identifying as disabled doesn’t have to completely define you. Disability is only part of you, even if it’s an important part of you. Living with disability and ableism is hard enough without also fighting the very idea of disability itself, while your disabilities continue to intrude in your everyday life. Embracing your disability can be an important step towards feeling truly comfortable and at peace with yourself.
Whether your instincts lead you to distance yourself from disability or embrace it, the choice is and always should be fundamentally yours. It’s also essential for non-disabled people to understand and respect the different ways people with disabilities choose to present themselves.