How to Presume Competence Without Dismissing Disability Support Needs.

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© Copyright March 2024.

*Thanks to my current personal support worker who showed me the “Assume I Can” video currently going viral online for World Down Syndrome Day, (see video here) which provided me the inspiration I needed to finish this, as well as the inspiration for the formatting change that allowed me to finish it so quickly.

I’ve been thinking lately about a couple topics that are prominent in the disability community currently. 1. The “autism is/is not a disability” argument. 2. The “presume competence” movement/philosophy. And as I was writing my blog post on the first issue (forthcoming), it occurred to me that those autistics who insist on the blanket statement that “autism is never a disability” are denying (or rejecting) some important aspects of the second topic. I started to get really angry at those who insist that autism cannot ever be a disability. I got angry because I realized that their behaviour was another example of ableism and intolerance being inflicted on me by people who presumed to know better than I do what living in my body, with my brain is like. People who have never met me, and know nothing about me. I realized that these people are engaging in beliefs and behaviour that is the opposite of presuming competence.

My life is already far too full of this type of behaviour, this rejection of who I am and what I know about myself. I get it from both neurotypical people, and (sometimes) from other (nonautistic) disabled people. I don’t need it from other autistic people too.

Because I present as a highly intelligent, decidedly capable person, able to handle many of the vagaries life throws at me, many people assume that’s all there is to me, and to my life. They then presume to know me better than I know myself, and insist that they are better informed about what my abilities, what my limitations are. Even when they’ve just met me, or barely know me. Even when they only know one aspect of me. They negate all of the self-knowledge I’ve gained in the decades since my disability diagnoses, all of the problem-solving skills I’ve developed. They negate all of the self-care skills and acceptance of myself as someone with limitations that aren’t commonly valued by society, that I’ve gained. They negate all of the self-advocacy and negotiation skills I’ve learned through the years, and all of the effort, time, and energy I’ve put into personal development and growth as a person.

These people who insist that they know me better than I know myself usually condemn me for practicing self-advocacy, often for even believing in self-advocacy, because it looks differently than they think it “should”. They condemn me because, in their opinion, I “shouldn’t need help” with the task I’m asking for help in. They often believe that I shouldn’t need help with anything at all, because I’m “too intelligent”, or “too capable” to be disabled, or to have cognitive or energy limitations in that area, or with that specific task, or part of the task. (And don’t get me started on those people who don’t understand that many ordinary tasks are often filled with individual components of varying degrees of difficulty, which may or may not make the overall task difficult or impossible to carry out for neurodivergent people. People who’ve never heard of executive functioning, or movement disorders).

These people negate not only my individuality, but my competence, my intelligence, and the independence I do have, with their presumption. They disempower me by their very claims that they are “encouraging my independence” – by negating my need for help, for support,

This is a side of “presume competence” that many people overlook.

Presuming competence is sometimes narrowly construed as “presuming a nonspeaking person is capable of thinking, feeling, and learning to communicate in some kind of conventional fashion (whatever form of AAC they use)”. But it is so much more than that. Presuming competence in a broader sense means that, absent concrete (and accurate) evidence to the contrary, the assumption should be that the disabled person in question is capable of learning the same things (though often in a different way) that a nondisabled person is, and participating in society to the same level (if they choose) that a nondisabled person is automatically granted.

In addition to these more often considered aspects, presuming competence also needs to involve the presumption that a disabled person is capable of self-awareness, self-monitoring, and self-advocacy. That disabled people deserve to learn these things, that we have the same right to autonomy that nondisabled people have. Presuming competence needs to involve the assumption that disabled people are capable of learning and practicing these essential survival skills, even if the end result looks different than it would for a nondisabled person. Of course, this requires that the authority figures and peers surrounding these individuals respect them and their needs enough to help them learn to pay attention to these needs – all of them, even the “inconvenient” ones (by nondisabled definitions).

Here’s a list of some of the most prominent “do’s” and” don’t’s” I wish people would respect when dealing with me (and other people like me):

DO:

• Do presume I know myself well enough to know when I need help.
• Do presume I know myself well enough to know when I’ve reached the end of my energy resources.
• Do accept my use of assistive technology, no matter how “different” or “odd” it looks to you.
• Do accept my use of AAC (alternative and assistive communication) technology.
• Do allow me to switch between speech and AAC use without comment or judgement.
• Do presume that I know better than you do when, where, why and how I need help with a task.
• Do presume I’m competent enough to learn these things if I don’t already know them.
• Do teach me these skills to me (in a respectful manner) if I don’t know them.
• Do provide me the experiences and the support I need to learn these new skills, so that they become reflexive.
• Do encourage me to practice these skills often.
• Do presume I’m capable enough to use these skills independently once I’ve practiced them enough for them to become reflexive.
• Do trust me to know myself, and know when I need to use my self-advocacy skills once I’ve gained these skills. (Don’t assume you know better than I do. You don’t live in my body.)
• Do trust that I’m good at looking after myself and using these survival skills, especially as I gain experience using them and with having my needs respected.
• Do trust me to communicate my support needs once I’ve learned to. (Even if that’s with a distressed facial expression, or other agreed upon subtle nonverbal signal rather than words).
• Do respect my intelligence, my self-development, my growth as a person.
• Do trust me to be capable of growth.

DON’T:

• Don’t tell me (especially repeatedly) that I can’t possibly know what I need, or that my limitations are different than experience tells me they are.
• Don’t insist that my difficulties are, or aren’t, what you think they “must be” because of the way you experience the same task(s), or other nonautistic people (especially NT people) do.
• Don’t tell me that I “must be” trying to manipulate you, or that I am “acting dependent”, or that I “don’t really need help” when I do ask for help with a task (especially specific help).
• Don’t tell me I need a different kind of help than what I’ve asked for. (You don’t live in my body, so you don’t know what I need, even if you have experience with other people with my diagnosis).
• Don’t tell me that if I know the specific help I need that I can’t need that help. (Knowing what to do and knowing how to do it are two different things.)
• Don’t tell me that I could or should “do it myself”.
• Don’t tell me I’m “being obstructionist” if I continue to insist I can’t do a task on my own, or that it will be too hard to do alone. (The consequences in terms of loss of functioning in other areas – or all areas – afterwards may be harmful to my health).
• Don’t say the above invalidating phrases when the difficulties involved are typical for autism. (Really, really just don’t!)
  • If you’re not aware enough of the types of difficulties autistic people have, learn. Or find employment in another field. (If you’re a family member, rather than a service provider, and choose not to learn, – or think it’s “too hard” to – then keep your judgemental opinions to yourself).
• Don’t insist “but you could do this before”, and use it as an excuse for why you won’t help with a task. The nature of autism, and the nature of invisible disabilities in general is that our abilities fluctuate (sometimes drastically) from one moment to another, one activity to another, and one environment to another.
• Don’t see me as only a case study, or a burden, or an obligation. I’m a real person, just like you.
• Don’t see me as a damaged version of you (or of NTs/nondisabled people in general). I’m a whole person, just as you are.
• Don’t confuse intelligence with executive functioning, or motor planning, or coordination.
• Don’t confuse intelligence with linguistic skill or fluency.
• Don’t confuse intelligence, or linguistic ability with ability to read nonverbal behaviour and interpret social cues.
• Don’t question my need for AAC or assistive technology in general. If I’m using it, then I’ve decided it will help me live my life.
• Don’t belittle my need for assistive technology (AAC or otherwise), or try to “wean me off of it”.
• Don’t criticize me if I need to remove myself from an overwhelming activity.
• Don’t prevent me from leaving an overwhelming environment for a safer one.
• Don’t criticize me if I need to cancel participation in an optional (or social) activity because I’m too overloaded or burnt out, and have decided to prioritize my own health instead.

In short: Respect me for who I am, and allow me to make my own (age appropriate) decisions about my own life. Don’t insist that I pretend (consciously or unconsciously) I can function at a nondisabled level all the time. I’m not a nondisabled person, and should not be expected to be one.