Ally’s pitfalls
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April is Autism Acceptance Month. It is a good time to rethink not only how non-autistic or “neurotypical” people can best support autistic people – but also how non-disabled people in general can better support people with any type of mental, developmental, or physical disability . There is no shortage of good intentions. Most people would say when asked that they at least want to do the right thing for people with disabilities. But being a good ally with a disability takes more than goodwill.
The disabled community is well beyond the point of being satisfied with simple recognition or statements of support as we could have been 30 years ago. We don’t even seek legal counsel if it means that non-disabled people speak for us and defend their exercise of our rights without our full participation or consent. It is always important to do the right thing when you can and to be on the side of disabled people and our needs. However, it is even more important to discover and center the concerns, priorities, and preferences of people with disabilities, even if you do not always understand or agree with them. We need allies to fight with us, not just lawyers to fight for us. Fortunately, we seem to be gaining more real allies every year. Well worth celebrating.
As more people learn about disability issues, it is important to be vigilant about how allies with disabilities can get lost. The following are three of the most common ways that even the best and most dedicated allies with disabilities can go wrong.
1. Listening to disability awareness seminars instead of people with disabilities.
Articles and training on disability and etiquette are certainly valuable. They can be especially useful for people who are just starting to learn disability issues. Formal training can teach the basics of behavior towards disabled people in social situations. You can learn a little about how everyday accessibility issues affect people with disabilities. And you can start getting some rough guidelines for frequently asked questions, such as: B. Whether or not disabled people should be asked about their disabilities, what terminology to use and what to avoid.
However, disability awareness seminars and webinars are not a substitute for hearing from people with disabilities. Our individual views and preferences do not always correspond to the standardized rules of “awareness of disabilities”. Some of us want to be left alone; others long for interaction. Some of us invite questions and are happy to explain their experiences. Others of us feel besieged by people’s curiosity and want to decide when and how we “educate” people about disabilities. The practical accessibility also affects each disabled person differently. Some of us are more concerned and confrontational about this than others. And we have different opinions on disability terms. Some, like the “R word” for intellectual disability, are clearly prohibited. Others, such as “person with a disability” or “disabled person”, are still open to debate and personal taste. Rules and philosophies learned in advance can help, but they will only get you so far.
The worst thing you can do is teach disabled people you meet in real life how to process our own experiences. However, this happens very often. It is quite possible, even common, to meet disabled people whose views on disability differ from those you have been taught. Never tell or imply to a disabled person that you understand disability issues better than they do, even if you have reason to believe that this might really be true. If you feel that a disabled person’s views on disability issues are wrong or not informed and that it is your job to educate them, stop yourself. Think about it carefully and proceed with great caution. Or leave it alone and respect the opinions and decisions of the disabled person you are speaking to.
2. Suppose you have a new and substantial idea without first finding out whether it is either new or essential.
At first glance, the disability field can look empty and neglected, especially for people new to the disability experience. It often seems like no one is doing anything – that the cause of disability inclusion and relief is starved for ideas, organization, and engagement. In some ways the disability culture is underdeveloped and fragmented, at least compared to some other communities. But it is also easy for the skill awareness to sneak in and add the idea that disabled people need outside inspiration and motivation, that the disabled community needs rescuers to rescue them from the darkness and get them in shape. Even some disabled people think this way, especially if they are new to disability or if they do not have much contact with other disabled people.
Indeed, the disabled community is dynamic, diverse and full of innovation. It’s also easier to find than ever. People with disabilities and disability issues are still not as visible as they should be in mainstream popular culture. But that is changing. And there are disability organizations almost everywhere that strive for change and help meet the needs of disabled people. Between the member organizations of The Arc and the Centers for Independent Living alone, there are hundreds of credible disability organizations in every state and in almost every county in the United States. And there are dozens of national disability organizations with a wide range of roles, priorities and philosophies. The American Association of People with Disabilities is another great place to start for people with disabilities and anyone who wants to be allies.
These organizations are not always perfect. It can also take a while to find the right home for your work with disabilities. Some people never find exactly what they are looking for and really need to start something new. But there are so many disability organizations doing so many things that it is impossible to say, how many are still doing, that there is “nothing out there” for disabled people.
In the meantime, it’s always possible for someone to come up with a really new approach or device that could revolutionize the lives of people with disabilities. But if you have an idea for something that could help disabled people, or a way that disabled people could do things better, chances are that disabled people have thought about it somewhere and tried it before. Sometimes we tried and it didn’t work. Usually someone is already working on it and could use your help in lieu of a double effort.
The disabled community is not always good at communicating our presence and promoting our work. But we do things. And we need partners even more than innovators or entrepreneurs. It can be difficult to join efforts already in progress rather than centering yourself and your own ideas. Sometimes it’s a sacrifice. But it’s the essence of a true ally.
3. Approach disabled people like a missionary.
There are many disability-related problems, disability-related problems to be solved and injustices to be addressed. Disabled people certainly need allies. But what kind is important.
More than ever, we need everyday voters to support bold plans to solve serious disability problems, such as the Biden administration’s proposal to invest $ 400 billion more in home and community-based services. We always need employers who do more than just superficially comply with the laws on disability rights and who actually hire, accept and promote employees with disabilities. In our daily life we all need friends and partners who treat us like full human beings, each with their own personality and their own priorities.
Unfortunately, it is far too easy for well-meaning nondisabled people to get lost in the role of savior and think that you and your role are not only helpful but also essential in the fight for disability rights and welfare. Despite decades of progress, the traditional relationship between non-disabled and disabled people still dominates. It is a combination of advocacy, charity, and caring. These are all nominally positive motivations. But they tend to add to inequality and can quickly become depressing. This is in part why some disability scholars speak of disabled people being “colonized” in some way. There is both a literal and a theoretical connection between everyday skill and historical colonialism.
It is possible to overdo the case and skill awareness differs significantly from, say, racism or condescension of the upper class. They are not the same and should not be compared superficially. But the poisonous mixture of superficial benevolence with underlying domination and exploitation that characterized colonial submission is eerily familiar to many disabled people today. Most of us have at one time or another seen ourselves cared for, cherished, and enthusiastically studied – and controlled, exploited and mistreated – often at the same time and by the same people.
While there are many specific improvements that disabled people need, overall we need agency and a voice the most. Taking more decisions out of our hands and further drowning out our voices – even if the cause is good – does not help us with the fundamental problem that too many of us have no control over our own lives, or a meaningful voice in our own affairs . So make sure that you are not in a superior position with the disabled people you “help”. And don’t let your own urgency and ego distort you about disabled people and the disabled community.
The mistakes of the disabled people’s association do not only lie with non-disabled people. Disabled people can also be self-centered and condescending towards one another and towards non-disabled people. But a lack of agency and an effective voice are a characteristic problem facing the disabled community. It is a problem that is often sustained and exacerbated by well-meaning, but careless, non-disabled allies. In the long run, having recognized credibility and control over our lives is usually more important than short-term relief and material gain. If you want to be an ally with a disability, do your homework and choose to fight with them, not for disabled people.
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