How To Do Something Good In The Disability Community If You’re Not Disabled
The field of disability services and advocacy is changing. One of the most significant shifts over the last few decades has been the rising prominence of actual disabled people within the disability field. While this is a positive development overall, it should prompt non-disabled people interested in serving disabled people to rethink their position and approach.
In the past, most of the workforce and leadership of disability organizations was made up of non-disabled people – people with some kind of interest in serving disabled people, but without disabilities themselves. Traditionally, disabled people were assumed to be incapable of organizing for themselves and serving each other. At the same time, disability service professionals were mostly expected to be service providers, counselors, educators, and supervisors, and only occasionally as advocates or allies. Even in advocacy, non-disabled people were, (and often still are), granted the default role of leader and spokesperson. This left disabled people themselves cared for, (after a fashion), but not empowered, spoken for, but voiceless. Changing this power dynamic has been a major goal of the disability rights movement. The growing prominence and leadership of actual disabled people over the last few decades has also helped the disability rights movement succeed.
Today, many more disability organizations are founded, led, and staffed by people with disabilities than ever before. Some, like the Autistic Self Advocacy Network and Centers for Independent Living are practically defined by being run “by and for” disabled people. Older organizations, too, are trying harder to include disabled people as leaders and spokespeople, not just as traditional recipients of charity, or objects of pity for fundraising campaigns. This is entirely appropriate and long overdue. It’s also a work very much still in progress, even in the most inclusive and progressive organizations.
Where does all this leave non-disabled people who feel they have a great idea for empowering disabled people, or simply a genuine desire to serve and uplift the disability community? Are non-disabled advocates no longer welcomed in the newly empowered and disabled led disability sector? Should non-disabled people interested in disability work brace themselves for suspicion and rejection?
They should certainly expect to play a different role than they might have 30 years ago. That holds true whether you want to be a nonprofit CEO, a grassroots disability activist, or a one-on-one aide to a single disabled person. Non-disabled people are generally welcomed, but they have a higher degree of honesty, selflessness, and humility to prove in the disability field. There is more to consider, but fortunately it’s not really that complicated. It mainly requires self-reflection and a willingness to serve before leading.
If you are not yourself disabled but are interested in working in the disability field, start by clarifying for yourself where your interest in disability comes from, and then put your plans through a critical checklist.
Everyone who wants to get into disability work has their own individual reasons. But it helps to note some of the most common reasons people who aren’t disabled themselves take an interest:
Having a child with a disability is one of the most common introductions to the world of disability, and also the one requiring the least explanation. It’s a commitment born of necessity and parental love. At the same time, it’s also the most difficult position from which to see the difference between speaking for a disabled child and being an ally to a growing and maturing disabled person.
2. Extended Family
Other family connections also introduce a lot of non-disabled people to disability concerns. This includes being a husband or wife, or a brother or sister to a disabled person – or a son or daughter to disabled parents and grandparents, or niece or nephew to aunts, and uncles who have disabilities. Extended families struggle with the everyday barriers their disabled loved ones face every day, while hopefully also developing an understanding and acceptance of disability that other people don’t.
3. Friend or Coworker
The challenge here is often to figure out how appropriate boundaries and disability etiquette change when a relationship moves from acquaintance, to colleague, to friend. In fact, it can be a challenge for any non-disabled person to figure out how to be a friend to a disabled person as distinct from an ally or advocate. You don’t have to be both, and being one doesn’t automatically make you the other as well.
While the “helping professions” in particular are all officially committed to serving and empowering disabled people, they also tend to informally promote some older and more deeply embedded ideas about disability and disabled people. Meanwhile, service professions often come with a mantle of altruism that can mask ableism and discriminatory practices if the professionals themselves aren’t vigilant.
5. Disability Jobs
Finally, for some, disability work really is mainly a job, not a grand calling. That’s not necessarily bad, but it complicates things in its own way.
It’s not unusual in some areas for some of the most plentiful entry-level jobs to be in disability service fields like home care and developmental disability services. These often seem like relatively secure jobs, requiring comparatively few credentials, and carrying high a degree social approval. People will admire you when you tell them what you do. The problem is that while these jobs are in fact essential and can be quite rewarding, they can also be very high stress, poorly paid, and not even very secure.
Nor are disability service jobs immune to criticism. Disabled people in particular often critique how their services are delivered, sometimes with a fair amount of passion and heat. This is natural. Who is in a better position than disabled people to judge the quality of disability services? But even justified criticism can contribute to disillusionment and rapid burnout in overworked and underpaid disability service providers.
Non-disabled people can avoid or more effectively weather these pitfalls and the shifting foundations of disability work with some honest self-reflection before getting deeply involved. Cornell University offers a helpful guide on how to be a good ally to disabled people. It’s a good start for approaching the disability community, or any community that is oppressed, disadvantaged, or otherwise needs to fight for equal opportunity, self-determination, and full social inclusion.
Once you have a clear idea of where you are coming from and what your motives and goals are for joining the disability field, it’s time to take an objective look at your vision, ideas, and plans. Here is a five-point checklist to structure your thinking. Before you dive into the disability field – as a parent or other relative, friend or coworker, professional or support worker – go through each point, and don’t be afraid to judge your own motives and plans as objectively as you can. It’s better to anticipate problems and adjust your approach now than to face a crisis later on.
1. Check your ideas, feelings, and priorities against what actual disabled people think and care about.
It’s not always apparent from the outside, but there is intense ongoing debate within the disability community. With a few exceptions, most of these disagreements boil down to a conflict between two impulses: safety, security, and shelter vs. freedom, self-direction, and social integration. There is also an important division between the Medical and Social Models of disability. In the Medical Model, disability is viewed mainly in terms of medical diagnoses and overcoming personal impairments. The Social Model focuses more on ableism, disability discrimination, and inaccessible environments.
Don’t worry, you don’t have to pick a permanent side or emphasis. And while disabled people tend to lean more towards the freedom and Social Model side of the scale, there are those who prioritize safety and medical matters as well. The important thing is to be aware of the conflict, think about where you place yourself and your ideas, and listen to what the people you want to serve care about most. Also, listen to the disability community as a whole, but also to individual disabled people who may have different views and priorities from the broader consensus.
Above all, if you find yourself assuming that your views on disability issues are more valid and important than those of disabled people – and you think it’s your job to set them right – it’s time to stop and rethink. You may be right in the end, but consistent disagreement with the disabled people you want to serve is a red flag you shouldn’t ignore.
2. Try to support already existing projects and organizations that were started and run by disabled people.
The disability field often appears empty to newcomers, but it isn’t. It may be neglected in important ways, and less discussed than other segments of public life, but it’s hardly unclaimed territory. Despite this, people are constantly starting new disability organizations to do what others are already doing, and inventing new gadgets that already exist, or that nobody has asked for. Disabled people do this too, but it seems to be an even more common mistake among well-intentioned non-disabled people.
Whenever possible, support existing efforts run by actual disabled people. Don’t “reinvent the wheel,” (or the wheelchair), unless and until there’s broad agreement from disabled people that it needs to be reinvented. And then listen to how they want it to be reinvented. You may find that disabled people’s ideas and priorities are quite a bit different than yours.
3. Read and listen a lot before you speak.
The disability community isn’t starved for ideas, persuasive arguments, knowledge, or logic. When you can be an equal participant in discussions, or perhaps a subordinate participant, by all means engage. But resist the temptation to lecture or correct. Remember that just like everywhere else, disabled people online are looking to develop their own voices and be heard, not to hear more of the same advice and admonishments they already get from non-disabled people in their everyday lives.
Do some homework. Read books and articles on “disability rights,” “disability justice,” and “disability culture.” For a start, check out the Gooodreads Disability History Books list.
If you’re wondering, the answer is yes, it’s relatively safe and useful to look into disability on social media, particularly Twitter, YouTube, and Facebook. But as always with these platforms, practice sound judgement and keep a level head before using your keyboard. Take plenty of time to follow people and read through conversations and debates before putting your own ideas and opinions out there.
4. Pass the mic and the baton to disabled people.
One of the most common and corrosive experiences disabled people share is the lack of a meaningful voice in their own affairs. This is not just in immediate personal matters, but in broader disability discussions and the culture at large as well.
One of the best things you can do as a non-disabled ally is to direct attention to disabled people and disability-led efforts. When you have an idea, first ask yourself if you can boost a disabled person’s similar idea. And when someone asks you to educate or comment on a disability issue, try to refer them to well-informed disabled leaders and experts.
And don’t forget diversity within the disability community itself. Don’t focus exclusively on one disability, or make the historically too common mistake of only talking to and highlighting young, attractive, white, and visibly idealized disabled people.
Although on paper it may seem technically “unfair” to privilege disabled voices over those of non-disabled people in disability discourse, the fact is that as a non-disabled person, your views are less important than those of disabled people. They’re not unimportant in every case, but less important, on average. Make peace with playing important but supporting roles.
5. Be careful not to make it all about you.
One way to check whether your ideas are in sync with the disability community is to ask yourself whether you are addressing a problem for disabled people, or a problem you are having in relation to disabled people. Whose problem are you actually trying to solve? Is it a barrier holding disabled people back, or an inconvenience for non-disabled caregivers? Either can be important, but it’s essential to be aware that they are often different.
It’s also doubly important to watch yourself for signs of self-aggrandizement. It’s dangerous in any field involving public activity and recognition, but worse in a field where disabled people are still so often denied agency, representation, and recognition.
Finally, and maybe most important, work extra hard not to take criticism or sidelining personally.
The best thing would-be non-disabled allies can do is to listen to disabled people and put our priorities above their own. On paper it sounds easy, and in a way it is. But it’s hard because for many people it’s a real challenge to the ego.
The disability community still needs assistants and allies. It’s still a cause worth fighting for, and a worthy calling for non-disabled people. It just requires careful thought and self-reflection, along with hard work and a good heart.
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