Autistic people, however, have repeatedly expressed a preference for identity first language. For some reason, nonautistic people who think they know better continue to ignore our (loudly and oft-stated) preference. To those people I say, “If you truly believe we’re people, first or otherwise, then listen to what we’re saying and respect our preference.”
Autistic is not a dirty word. When you act like it is, you aren’t helping autistic people. You’re contributing the very stigma that you pretend to abhor.
Or blind, or…, or single, or married…or male, or female, or ???
The problems with person first language have been talked about extensively in the autistic community. Many autistic people have expressed a strong, explicit preference for identity first language. And yet, we’re still treated to comments like this one (paraphrased from a comment on another blog):
I work with children with autism and I always say child with autism because they’re children first and autism doesn’t define them. Also, I say typically developing child instead of normal, because normal has negative connotations. Words are important–they reflect how you think.
My first reaction to reading that type of comment is always, “aren’t the typically developing children also children first?”
Or do we just not need to be reminded that they’re children?
If you don’t use normal because it has negative connotations, does the same logic apply to the use of autistic? Or does autistic exist in some special category of word…
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Inequality is a complicated term. It can be applied to so many factors, for one thing. There’s income inequality, asset inequality, gender inequality, social, class, political … you name it, someone, somewhere likely feels (and is) hard done by. And, for all the focus that Thomas Piketty has gained for his analysis of a new, ever-diverging global class of the superrich, inequality is still personal. As such, we asked an international group of artists, designers, photographers and activists to provide one image that encapsulates what inequality means to them — and to explain their selection. See them all below.
Photograph: Ryan Lobo.
Ryan Lobo, photographer, India
“Here is a photograph I made of a little boy who lives in a slum outside one of India’s most successful IT companies, the Infosys building in Bangalore.
India has very unequal patterns of development, and though the economy has benefited, most of India’s 1.28 billion people remain deeply disadvantaged.
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I’ve just listened to an interview on Open House with Dr. Christine Durham titled, Unlocking My Brain. Dr. Durham has an acquired brain injury as a result of a car accident, and talks about her recovery and experiences since her accident. She is clearly extremely diligent, insightful and in tune with herself and her surroundings, even amongst the confusion of brain injury and difficulty communicating. She completed her Master’s and a PHD after her accident!
A few things stood out for me as she described her experiences and journey thus far, and her altered but marvellous abilities and processes that have steered her toward such a magnificent level of recovery and insight. She mentioned more than once the shame she felt at not being “a proper person” and the all-encompassing pain not known or seen by outsiders, together with trying to find “Christine” (herself) either at home or at university or teaching at school.
Because she couldn’t communicate initially (and she nutted out her own forms of communication with half her tongue missing) things were done to her and expected of her without considering her pain may have been greater or different than another patient’s, or that she may not understand what was wrong with her brain, or that she was thinking and feeling things even when not communicating anything. It seems all but one doctor made Christine feel she had no hope. Her hope began to rise at her own accomplishments through her pain, ingenuity, and supportive husband, coupled with this one doctor who said she had the choice to learn independence or stay at home – acknowledging that whichever choice she made it was her’s to make. She sat in university lectures hearing gobbly-gook until something started to make sense. She returned to the classroom teaching without writing, guiding her students in other creative ways, and she began and completed a PHD on acquired brain injury profiting from the experiences of others along the way as well.
I’m not going to throw stones, because I can be guilty of assumption as much as the next person, but Christine’s negative experience seems to have been compounded, even exaggerated or extended due to presumption or transferring one’s own experience onto her as the patient rather than thinking outside the box in an endeavour to find out what her experiences and abilities might actually have been. If someone is reacting in a way that I would feel inappropriate for me, or even for them, perhaps I need first to consider as many of the possibilities as to why they may react this way. Possibilities that would never be true of me included.
When a child who might be classed as being on the autism spectrum is being “educated” in an open learning environment and is screaming and rocking or hitting from under a table, perhaps they are in excruciating pain and in sensory overload from the electric cooking equipment in one part of the building , the music in another, and reading aloud in another. As opposed to the presumed misbehaviour when compared to the teacher or another student. Perhaps the student who is blind is frustrated because they are constantly instructed to “learn to speak up” if not getting the teacher’s attention, when in fact other students don’t have to distract the teacher to get attention. Perhaps the person who has had a stroke would like to take longer to get to the next room independently rather than more quickly with someone pushing them in a wheelchair; they may also wish for you to sit and have a conversation with them that takes much of your time because you have to listen attentively and you both have to repeat yourselves, but they wish for you to know what they are thinking and feeling (or even that they do in fact think and feel).
Getting to know people takes time, lots of time. It requires letting go of assumptions, prejudices, insecurities and pride; and embracing vulnerability, humility, one’s own weaknesses, and an interest in someone else’s experiences, opinions, needs and desires. It’s a taxing thing, but much less of a destruction to one’s own soul than guarding, retaining, defending, justifying, focussing and absorption in one’s own familiarity without scrutiny and self-examination.
Oh to grow and learn every day I’m alive!
This has become a catchphrase in the autism community. And for good reason. It’s certainly true.
A child runs from a store and experts assure the frustrated parent that behavior is communication.
A parent asks for advice about why their recently diagnosed child bursts into tears at bathtime and experienced parents nod in sympathy. “Behavior is communication,” they say.
A child refuses to eat anything but raw carrots and pancakes and the child’s occupational therapist isn’t the least bit surprised. Behavior is communication.
A child flaps at a wind-up toy that’s stopped moving and the experts . . . somberly intone that the child doesn’t know how to communicate . . . that he isn’t aware of the adults around him and is “trapped in his own world”, unable to share his joy with others.
An adult walks away from an autism researcher who is treating him as…
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As I think back over the journey of having children who happen to be blind, I see so much that I would never have known or experienced without them.
Yes, the obvious of parenting; the marvel of new life, dependance, sleeplessness, responsibility…But so much more!
How the body works; theirs, mine, other children’s and their family members we’ve met. How the body works differently when genes or brains or – whatever – don’t operate as they were designed to. How differently bodies and minds and emotions and souls and families work, for recognised and unrecognised reasons. So many varied ways to overcome obstacles – our own or culture’s; physical, emotional, attitudinal. The dreaded P word (perseverance, ugh!), patience, wonder, ‘aha’ moments, creative thinking, someone else’s creative thinking, the excitement and frustration of difference…Oh my, and so much more!
I would most like to mention just now a phrase I learned, used by some Early Childhood Educators who worked with our children, “We do a lot of sitting on our hands!” Hand-sitting. I have found that hand-sitting is a good principal to follow in many of our relationships, not just in teaching children with a vision impairment a new concept or activity. I must confess right off that this is a struggle for me also, especially when I’m weary or stressed or in unfamiliar surroundings. The desire or need to be ‘hands on’ sometimes seems overwhelming, but it is not.
If the child (or in fact adult) who is blind does not experience for themselves, they rarely if ever learn what is being taught. Once they have concrete experiential knowledge, learning in theory may take place, but there must be a foundation of experiential learning for the mind to develop new learning from. Now, this is true of everybody, but the individual who is blind (particularly a child in the company of an authority figure) often has their opportunities for independent experience taken from them. Guided learning is necessary, important and valuable, unfortunately we too often do an activity for rather than guide through.
As I have said, I still do not do this every time. So valuable, even imperative, is it to guide through, that I am at the very least frustrated with myself whenever I have neglected to be attentive to do so. I have heard of some adults describing hand-over-hand coaction as being similar to covering the eyes of someone with sight while expecting them to see. My children have gained little to no information from something while coaction is occurring. This can be very difficult for a parent or teacher, or therapist to conceive of, especially when we consider that it is an acceptable practice when working with many other types of difference. I believe, though, that we often use this principal in other places where it would be more productive for, and less offensive to, those with whom we are seeking to be of benefit if we guided in less intrusive ways. Learning to be more descriptive is of inestimable value, just as the use of pictorial guidance has been enlightening, less intrusive and effective for many of those on the Autism Spectrum and people alongside them.
Alongside! Mick and Ruby Duncan from New Zealand have developed a way of serving others which they call “Alongsiders”. If we’re going to do a lot of “hand sitting”, I think we will also be doing a lot of “along siding” and both inhibit the problem of intruding. Physically, emotionally, socially, mentally; intruding is not only offensive to those we intrude upon but counterproductive to any kind of independence, interdependence, maturity, individuality or self-actualisation we are seeking to encourage. It will take some self-control. It will take some empathy. It will take some soul and attitudinal searching of ourselves. But the personal benefits are also incredible! Less pressure, on us and those we’re working or living with. Less tension in relationships. Less frustration when our own ways are not adopted. And those we love , serve, teach and care for will want us alongside them. And they will become who they were designed to be and interact with the world as they were designed to interact with it, and us.
I am not advocating that we leave ourselves and others as we are. I believe we thrive when we grow and learn, and I believe we need to learn things that we are not familiar or comfortable with and are sometimes afraid of. But how we learn and teach is important. Understanding how someone learns is imperative for beneficial, productive teaching. Parents, families, teachers, therapists, lecturers, doctors, nurses, others…lets first understand how we learn and love, then try to understand how others learn and love…then lets learn and love together!