Respect as verb, as action rather than feeling, has been a hot topic in neurodiversity circles lately. This is because of a problem of disrespect which becomes more apparent as Autistic voices are included in discussions of the issues that affect us more and more. People are coming to understand how important it is to include Autistic people in discussions of the issues affecting us. This is a positive development, the result of years of advocacy. Unfortunately, outsiders don’t always practice that inclusion in the right ways. There are growing concerns about undignified tokenism and even exploitative labor practices. While this set of issues isn’t something we brought upon ourselves, no one else is going to fix it. We will be treated with respect to the extent that a critical mass of us demand it. That is especially important to remember with April just days away.
The problem of disrespect shows up in a variety of ways. It can take the form of expecting Autistic or otherwise disabled people to volunteer where nondisabled people are or probably would be paid to perform the same kind of role. It can take more subtle forms, like pushing Autistic people to do things almost no neurotypical would be willing to do, making excessive demands on Autistic people’s time, displaying, rather than genuinely involving, listening to, and utilizing the skills of Autistic people, or failing to abide by basic, professional norms where Autistic people are concerned.
These kinds of occurrences are increasingly common as nondisabled people working on disability issues learn the phrase ‘nothing about us without us’ faster than ableism erodes. Not all unpaid work is exploitative or ableist. There is a seemingly endless amount which needs to be done to give disabled people a better lot in life in this society. Some organizations are tackling important issues with help from volunteers, and the volunteers often find the experience personally or professionally rewarding. Not every request for advice from a parent of a newly-diagnosed child is a bad thing. Someone needs to be giving that advice. We need more disabled people in professional roles related to disability. Someone has to do the work. Otherwise, it will never be done.
That said, there are better and worse opportunities to work on disability issues, on a paid or volunteer basis. A job or a volunteer position where Autistic people’s skills are utilized, where we work on the same terms as everyone else, whatever those terms may be, is a good thing. Agreeing to work in discriminatory conditions is not. If nondisabled people are being compensated, having their travel covered, or allowed input into important decisions, disabled people who don’t advocate for like treatment are ratifying ableism. We never deserve to be treated disrespectfully. We never deserve to be understood as less than full, equal persons. However, when we acquiesce to unequal status, we can hardly be surprised when it doesn’t change.
Equality, as a practical matter, is rarely given as a gift. It is usually only available to those who stand up and take it. This is important for us all to remember as we wait for April to start because April is full of both opportunities and pitfalls. Autistic people who are known as advocates in their communities would do well to remember their self-respect as they make their final decisions about things like speaking engagements. There may be some real opportunities for advocacy, for participation in decisions that affect us, for making ‘nothing about us without us’ a reality.
However, agreeing to make that speech or write that blog post for free while neurotypical participants are paid or to serve as a token or self-narrating zoo exhibit is demeaning. Demeaning ourselves hurts our cause more than the attention could possibly help. When we don’t treat ourselves with respect, others see that and realize disrespect, or even exploitation, is something we are willing to accept. This April, let’s be careful to avoid inadvertently inviting others to deal with us as less than fully human. Self-respect isn’t sufficient to win justice and equality for Autistic, and otherwise disabled people, but it is necessary. The first step to winning the respect of others is respecting ourselves.