AAC, autism, disability

The Presumption of Competence

Content Note: discussions of abuse, denial of communication, functioning “levels”

(This was written in response to the 22 November 2020 Autchat discussion prompts on presuming competence. I felt that I couldn’t accurately say what I wanted to via tweets. Apologies if this makes little sense; when I wrote it, I was a} extremely tired, b} sick, c} dealing with ~1000 people following me on Twitter in two days because of a thread about non-/semi-speaking autistics, and d} fighting with a massive bug bite on my foot that only seemed to stop itching temporarily through a combination of Benadryl and ice packs.)

(Also, I realize that “competence” is also a legal/medical term with a very specific meaning that is often weaponized against disabled people, especially people with cognitive, intellectual, developmental, and psychiatric disabilities. For the purposes of this article, I’m not referring to the medical/legal term.)

Presuming competence means many things to me but “independence” is not one of them. Not only because nobody is truly independent (we are all interdependent to some degree) but because independent is not a synonym for competent. Presuming competence means we presume people are experts on their own bodies and minds and know what they need, even if they can’t express it. Or, if they don’t know what they need, they are still experts and should still be consulted and assisted in making a decision, not have a decision made for them.

For example, a person may be upset and not know why. In many autistic people, this is because of issues with interroception, the ability to interpret signals about the state of one’s body. In this example, the person may be hungry. They may need to use the bathroom. They may have a minor injury. But something about their body and brain means they can’t effectively interpret those signals. They know that they are upset and in discomfort. They don’t know why.

Presuming competence means giving that person options and advice, not just making a decision for them. “Do you need the bathroom? Do you want something to eat? Are you in pain? How about we go for a walk? Do you want help washing up?” Obviously, you don’t ask these questions all at once. But you ask them and you give the person options.

Presuming competence means presuming that people are active participants in their own lives, not just passive things to be acted upon upon. It means that even if someone needs a lot of help making decisions, even if someone has limited communication even with assistance, even if someone is reliant on those around them for help with basic tasks, we still presume they have wants and hopes and dreams and a rich inner life. One’s inner expression cannot be judged by what one can (easily) express externally to others.

I am very deliberate in how I phrase this. I do not want to leave anyone out. I do not want to imply that only people who can meet certain benchmarks if properly supported are deserving of the presumption of competence. The presumption of competence is not only for people who can graduate college or live on their own or hold a stable job if properly supported. Everyone, regardless of education, employment, living situation, future plans, ability to communicate, desire to communicate, institutionalization/incarceration history, specific disability, or any other characteristics, deserves the presumption of competence.

For instance, I have seen many examples of AAC being justified through people who went from being able to ask and answer the most basic questions to being able to graduate college. That is fine. That is an excellent justification for AAC. But AAC is also justified for people who need it and do not/will never go to college. Someone whose AAC means they go from having no reliable communication at all to being able to ask and answer basic questions still justifies the need for AAC.

And it is important to me that we do not predicate the presumption of competence on meeting any benchmarks because if we do that, it is far too easy to give up on people who don’t meet those benchmarks. Everyone has the right to support, no matter what they achieve with it. I have seen too many parents counter success stories of college graduates who use AAC with “well, my kid can’t even tell me what they want to eat!” and refuse to engage further. Maybe your kid can’t tell you what they want to eat right now but could if they had robust communication supports that worked for them. Maybe they will never be able to clearly express what they want to eat. It does not matter. They still deserve communication. And likewise, everyone deserves the supports they need, no matter what they are capable of now or what they would be capable of with those supports.

Presuming competence means presuming humanity, and humanity is not based in how well one can match one’s peers when properly supported. Humanity is a given; it is a right, not a privilege. Presuming competence means realizing that, in most cases, people can achieve their goals if properly supported. It does not mean assuming that someone does not need help or that someone needing help means they are unable to achieve their goals.

Because one rebuttal to “presume competence” I see is often “but [X person] can’t do [Y thing], so if I presume competence they won’t get help.” Presuming competence doesn’t mean presuming someone has existing skills or can operate independently. It means presuming the ability to do something with the right supports and aid. One can be competent and still need help. We have only to look to non-disabled people (whose competence and humanity, strangely enough, are not generally called into question over an inability to meet arbitrary benchmarks) to see this is true. Non-disabled college students generally need loads of help their first semester and yet nobody argues they should be denied basic rights or kept from attempting their goals because they need to be reminded not to leave the oven in the common kitchen running after they finish cooking.

AssistiveWare, the company that makes the AAC apps Proloquo2Go and Proloquo4Text, has a great blog post on presuming competence where they define presuming competence in AAC quite simply as the principles that:

  1. Everyone has something to say
  2. Everyone can learn

I think we can expand and adapt this to more broadly encompass what it means to presume competence in all scenarios, with the principles:

  1. Everyone has goals, hopes, dreams, and ideas
  2. If properly supported, everyone can attempt their goals, hopes, dreams, and ideas
  3. A person’s goals, hopes, dreams, and ideas are not less valid or less worthy because that person needs more support or assistance to attempt them

What I am trying to stress here is that everyone deserves the presumption of competence. Moreover, everyone deserves a presumption of competence that is not conflated with a presumption of independence or a presumption of certain daily living skills. When we conflate presuming competence with presuming “independence” or presuming certain skills, we are denying people with the most significant support needs – the people who most need and benefit from those around them presuming their competence – their autonomy. For many people, unfortunately, conflating competence with independence or certain daily living skills means that they will never get a chance to succeed. The presumption of competence has no prerequisites. It has no conditions for the person in question other than they be alive.

But the presumption of competence does have conditions for those surrounding the person. It requires and demands that other people – family members, teachers, therapists, doctors, support staff, friends, etc. – see the person as fully human. It requires that we fight for and demand the recognition of the autonomy of everyone. It requires that we stress everyone has the right to live their best possible life – and it requires that when people are prevented from that because of social, economic, and political injustices, we remedy those.

The presumption of competence is, fundamentally, an issue of human rights and dignity. It is an issue of making sure nobody is left out or abandoned. It is a right, not a privilege to be earned. And it is for everyone, not just for those who can prove themselves.

Because everyone deserves inclusion. Everyone deserves a chance at their hopes and goals and dreams. Everyone deserves to be free of interpersonal and societal violence. And everyone deserves to have the freedom and autonomy to make decisions for themselves.

All of those things start with the presumption of competence.