Two years ago, I met two friends who became incredibly important for my understanding of myself. What was so special about them was that they were both so accommodating of different needs and treated each person as the authority on their own condition. Through these friends and through learning about and identifying with new labels I grew to better understand my needs. Parallel with this came a realization about how my family, my society and I respond when people presented non-normal needs.
Upbringing – Denied needs
My sister and I have both always had non-normal needs. As children we struggled with falling asleep, with eating, with social interaction, with noises and water and many more things. I now know that in my case at least this was partly due to being autistic.
My first experiences of other people reacting to my non-normal needs were of course my parents’ reactions. My parents, believing in independence, believing in their authority to teach us what we ought to ask of others, and having no sense of us having “special needs”, did not recognize, validate and accommodate all of these needs. Rather, when we expressed some such needs we were seen as being too demanding, too needy, even selfish. Of course, the same thing happened in school and other interactions with adults, and the same thing kept happening as we grew up.
Response to invalidation
Having your needs denied by your family and society is painful and creates a dent in your sense of self and sense of worthiness independent of your contribution or burden on others. My sister and I, being very different people, had different reactions to this treatment. I, being an introvert and a very cerebral being, denied my needs and became extremely independent, not wanting to give anyone the power of making me feel small or needy. I didn’t ask for help, I didn’t expose myself to rejection. In as far as social interaction can be seen as a game I said “I’m not playing”.
My sister on the other hand, being an extrovert and a very emotional being, was extremely open about her needs and became dependent on others. In terms of attachment theory, I became avoidant, she became anxious.
These responses to how we were treated determined how we learned to respond to others with non-normal needs. My sister is open to many different needs. I, on the other hand, have been much more consistent with my father in telling people to keep their needs to themselves.
I thought for a long time that I was better off with my reaction. It afforded me some of the privileges of the majority. I avoided being put down or controlled. I saw how people like my sister were treated and I dreaded it: Dreaded someone else having that kind of power over me.
But here’s the thing about ignoring your needs: You end up numb, you end up alone, you end up putting yourself through abuse/neglect to avoid someone else putting you through it, you end up sick and you end up abusing/neglecting others.
The neglected becomes the neglector
Not only did I not fight for my needs (which I did not know I had) but I took on the role of the oppressor in dealing with people with similar needs to mine. Other people displaying non-normal needs made me uncomfortable. It went against my world view (wanting to see us all was independent) and made me afraid for their safety. So I questioned their needs. I questioned why they needed to make their functioning the problem of other people. I told them to toughen up. A few such instances:
- At 14 a friend from school was getting bullied. I didn’t tell him to talk to the teachers. Instead I instructed him to pretend he had no needs: I told him that if he ignores them they’ll stop.
- At 17, my sister winced when I showed her how to pluck her eyebrows. I didn’t teach her to listen to her body, instead I told her to pinch herself at the same time, that way she wouldn’t feel the pain of the tweezers.
- At 24, it was suggested that we present ourselves with our pronouns to the new students coming into university, to make trans-people feel comfortable. Feeling like there should be a limit to what is required of the majority from such a small group, I suggested that this was taking things a bit too far.
Change through seeing needs
It was only when I gained an understanding of my own needs that I grew to have a better understanding of needs in general and to be able to handle other people with non-normal needs more responsibly. And this all started with meeting people who treated my unusual needs as valid.
However, this change is hard to create if you don’t realize that you have needs. And here is where the societal structure dimension comes in.
One reason you might not realize you have needs is because your needs are constantly invalidated. Another is because your needs are always in sync with the norms of society. Let me explain:
Societal structures and validity of needs
We live in a society that treats certain needs as more valid and natural than others. An easy example can be taken from how people view autistic versus allistic (non-autistic) needs.
To stereotype a little:
- Allistics need you to look them in the eye for emotional validation when you speak with them, autistics need to look away in order to process information when you speak with them.
- Allistics need spontaneity, autistics need routine.
- Allistics gain comfort and information through social non-literal social exchanges such as “how are you – good”. Autistics need exchanges to be literal for understanding.
Both the autistic and the allistic person has “demands” on what the other person does, and yet at best we see only the autistic person as the person with needs, or at worst we see the autistic person as a person with unreasonable demands. This regardless of the effort the autistic has put in to accommodate the “invisible” needs of the allistic person.
This has effects on how both the autistic and the allistic needs are seen. We may compare the experience with swimming with or against a current – the current being a metaphor for which needs are treated as “normal” and thus for the support you are automatically given in society (see “The hidden brain” at https://www.brainpickings.org/2014/04/09/the-hidden-brain-shankar-vedantam/)
When you are swimming against the current and nobody acknowledges that there is a current you attribute your struggle to yourself and see yourself as defective. The autistic thus starts to see their needs as invalid, as me and my sister did.
At the same time the allistic’s needs and dependence on society are masked. When you are swimming with the current, and no one has told you there is a current, you don’t notice that you are being helped and that you would struggle and need help if you were swimming in the other direction. You attribute your success to yourself, not the stream.
Why am I writing this?
I will write elsewhere more specifically about how non-normal needs are rejected, the defensive mechanisms keeping us from acknowledging others’ needs and how this plays out in specific cultures, such as Swedish (independence and equality) culture and rationality culture.
In this article, however, I wanted to paint a general picture of the rejection of non-normal needs in our societies and the consequences this has, using myself as an example. This affects disabled people and other minorities, but also other people who are not seen as the norm despite being a majority in society – for instance women.
Why am I writing about this in a blog about accessibility? Because I have learned two things in the last year: 1. Accessibility is as much about society as it is about the person with “special needs” 2. Validating the reality of the problem is crucial to being able to do something about it. Seeing the current and seeing that we are biased Not to see the current, have both been crucial for my ability to see, validate and adapt to my needs, as well as treat others better.
When I started to understand my own needs, I realized that the way I and the people around me react towards people with non-normal needs has clear negative consequences on our sense of worthiness, our ability to identify our own needs and our ability to form healthy relationships with others.
The process of discovering our needs and discovering the way we have been treated and are treating others is painful. But once we understand the system of rejected needs that we are a part of and internalize, we can start to change it.