February 17th, 2019
The word ‘neurodiversity’ has come a long way. What started as a fringe term has gone mainstream. What was a signifier of radical ideas has become a buzzword. The word, and many of the concepts that surround it, are getting watered down by people who use it without meaning what it used to mean: a fierce, unyielding commitment to the idea that everyone gets certain things: equality under law, dignity of risk, self-determination, and real opportunities to build a life worth living. It meant building rich, diverse coalitions with many different people to meet our community’s needs but never relying on anyone who won’t agree to our full humanity as a basic ground rule of working together. One of the upsides of our growing visibility is a constant flow of new people into the community. With the definition of some of the words many of us used to state our collective identity loosening, we need to talk more about the things at the heart of Autistic culture and community so that new people find out what it all means. One such concept, one we really can’t afford to lose, is mutual support.
People in the Autistic community have historically been good about helping each other. In some ways, the community runs on the constant flow of advice, emotional support, leads on gigs or jobs, and, sometimes, practical and financial support we give each other. New people see their peers trying to be helpful to each other and often want to get involved. This impulse is to be nurtured and encouraged because it has the potential to make life better for us all, but the urge to help has pitfalls, especially for people who are new to advocacy. They stumble into volunteering or even working for organizations that exploit them, supporting projects that perpetuate the exclusion of people with disabilities from mainstream society, doing a lot of public speaking and writing before they have settled into their own opinions, and otherwise causing problems for themselves and others. The best way to empower new people to avoid these pitfalls is by giving them good information. For that reason, it is important to define the kind of mutual support we have had in the past and protect its meaning from being watered down or co-opted.
Real support for fellow Autistic people follows neurodiversity idea that no one is too impaired to belong, and people with disabilities’ rightful place is in their communities. Activities that promote people with disabilities being integrated or voluntarily spending time together serve this aim. Trying to “help” by propping up segregated settings isn’t actually helpful. Segregated settings are usually not what those of us whose minimal support needs or adequate supports give us real choices choose. If it isn’t good enough for those of us with options, it isn’t good enough for anyone. If someone would enjoy a particular activity or wants to be more engaged with daily life, get creative. Get demanding. Help by trying to get that person supported and included, not by creating a separate and unequal alternative.
Mutual support must also take a welcoming view of who belongs in the Autistic community. We will exclude some Autistics unless we pay attention to intersectionality. Sometimes, this will involve supporting other Autistic people who are challenging forms of discrimination you may not have experienced or working with people who may not work, speak, or pray like you to get things done. If you listen to what Autistics of different backgrounds say about their lives and the problems they face, your efforts to help others will be more effective. You will be less likely to accidentally leave people out. It is also important to respect diversity of opinion. Autistic people come from a variety of backgrounds. Some have more access to or ability to pick up the latest in social justice terminology than others. Not everyone will always agree, and not everyone will always use the right words. We can differ on a lot of things and still help each other, support each other, and enjoy each other’s company so long as we can all follow that rule about recognizing each other’s common humanity and acting accordingly. Someone who engages in violence, harassment, theft, or abuse of power or clearly believes only some people are fully human may sometimes have to be excluded for the well-being of others. Everyone else belongs, no exceptions. Mutual support that deviates from this principle weakens the bonds of our community and risks reducing it to an echo chamber.
Prudence is another important part of our practice of mutual support. It is important to consider your own ability to give. Sending money to your friend who needs help paying utility bills is great unless it will keep you from covering your own rent. Risks and sacrifices should be carefully considered. By the same token, agreeing to do or help with something that requires special skills, knowledge, credentials, or expertise when you don’t have those things is not useful. Consider what you have in abundance, whether it’s money, time, expertise, or a particular skill. Remember that just being openly Autistic is a gift to our community because the visibility reduces stigma. Try not to give to the point of adding yourself to the large group of people in need. Your time and resources are yours to use, so you can always decline any individual request. You are never obligated to explain your ‘no.’ That said, community means some degree of mutual protection and assistance. We operate on the assumption that things will work better if we all chip in what we can, so it is important to be intentional about giving more as one’s ability to give increases.
If we can maintain a social norm of mutual support that is inclusive, compassionate, intersectional, and thoughtful as our community grows, more people with the autism label will see value in the community and want to engage with it and identify as Autistic. The newcomers will, in turn, make the community stronger and more valuable to its members by engaging in mutual support. If we forget this, if we let mutual support become watered down, the quality of our community will decay. More need will go unmet. Younger Autistic people may not see the point of engaging with the community. Its numbers and strength may diminish. If that happens, more will be said and done about us without us because we will not be as able to mount an organized response. Working together is helping to secure our future. To have a future, we must continue to practice mutual support and get it right.