Autism Reading, and Disability Reading, and Assorted Reading

Standard

On Autism’s Edges is Five Star Autism Reading. What I’ve written in this entry isn’t all “five-star” (I have a horrible time figuring out starring systems like that, I always want different ratings for all different parts of something), isn’t all directly autism-related (although I think all of it should be relevant to people concerned with autism), and isn’t all even technically reading. Nor is it complete. But it was inspired by the Five Star Autism Reading thing. Ways of finding the books, or occasionally reading about the books, are linked to on the images of the books themselves.

Well-Known Autistic Classics

Labeled Autistic Nobody Nowhere

These books are Temple Grandin’s Emergence: Labeled Autistic, Donna Williams’s Nobody Nowhere, Sean and Judy Barron’s There’s a Boy In Here, and Thomas McKean’s Soon will Come the Light. They were some of the first books out there by autistic people.

I hear a lot of people saying that these stories are stereotypical. It’s important to realize that at the time each of these was written, the authors did not conform to stereotypes. “Thinking in Pictures” was not an autism stereotype until Temple Grandin wrote about it. She didn’t conform to a stereotype (in fact she demolished several), one got defined based on her. The same goes for all of the other three books.

This is not to necessarily say I like these books (I do, to varying degrees, like some of them). But all of them are important, because they’re the first widely-published books about autism with autistic instead of non-autistic authors. And complaints about stereotypes may be legitimate, but it’s important to remember that each and every one of these authors broke several in writing these books. In fact, all of these authors wrote about things that many more recent authors seem reluctant to write about, which is one thing I like about these books. There was not as much of a fixed pattern for autistic autobiography back then, so they did not conform to one.

All of these authors have gone on to write other books. (Two of them have even collaborated.)

Lesser-Known Autistic Classics

Silent Words Stephen Wiltshire's American Dream
Stephen Wiltshire and David Eastham’s books seem, at least in America, to be obscure. So obscure I can’t even find David Eastham’s first book, only his second, and that one was published after his death. Someone who tracked down most of Stephen Wiltshire’s books for me had to order one of them from as far as New Zealand.

I don’t know why this is. Stephen Wiltshire’s art is fantastic and he’s won awards for it. David Eastham is as far as I know the first autistic author to publish a book as an autistic person. Both of their books seem unreasonably obscure.

Poetry (Autistic)

Not Just Anything The Light Within And Love Was All He Said

Not Just Anything by Donna Williams, The Light Within by Lincoln Grigsby, and And Love Was All He Said by Michael O’Reilly are all books of poetry by autistic people. And they’re three of my favorites. My tagline for this blog is from And Love Was All He Said.

Autobiography (Autistic)

Beyond the Silence Lucy's Story Reflections of Self
Beyond the Silence by Tito Rajarshi Mukhopadhyay, Lucy’s Story by Lucy Blackman, and Reflections of Self by Sondra Williams are my current favorites among autistic autobiographies. They say things I’ve found hard to figure out how to say, and that’s probably the common thread among them.

Anthology (with Autistic Authors)

Sharing Our Wisdom Women from Another Planet Autism and the Myth of the Person Alone
All three of these books are collections of writing by autistic people. Sharing Our Wisdom is conference presentations by autistic people who would be regarded as all over the “spectrum”. Women from Another Planet is writing collected and written by autistic women. Autism and the Myth of the Person Alone is by autistic people who were once intellectually underestimated, learned to communicate in unusual ways, and now type independently and/or speak. I find it more useful sometimes to read books with many perspectives, like these, than to read books with one, and so these are more interesting to me than most autobiographies.

AAC (Augmentative and Alternative Communication)

Speaking Up and Spelling it Out Contested Words, Contested Science

Speaking Up and Spelling it Out is a bunch of essays about AAC by people (mostly with cerebral palsy) who use it.

Contested Words, Contested Science is about facilitated communication (a method, among many, of learning and using AAC), and specifically about the controversy surrounding whether the disabled person is actually the one writing things. I don’t use physical support very often, and even I sometimes have people trying to prove that I don’t write what I write. It would be much harder to prove it if all my typing usually relied on physical assistance, yet that’s exactly what one autistic man in this book sets out to do. In one chapter, he sets out to take and pass the same kind of test that many other FC users have failed, and it takes a lot of practice but he does it. Essential reading for anyone who thinks of this as an outmoded hoax.

Life and Death Issues

Violence and Abuse in the Lives of People with Disabilities Four Sight
Violence and Abuse in the Lives of People with Disabilities is one of those books that I wish were not out of print. I hear it’s going for a second edition at some point, and I hope that happens. It’s written by the father of a man with an intellectual disability, and he’s also worked as staff in institutions. He goes into more detail than I’ve seen anywhere else on the roots and solutions to violence, abuse, murder, institutionalization, segregation, “eugenocide”, and other things that threaten disabled people on a regular basis. He gives lots of references. Unfortunately he dismisses FC as useless and dangerous. But otherwise it’s a really good and important book.

Four Sight addresses life and death issues in the disability world that too many people shy away from because they go against some pretty ingrained taboos. The authors come from various parts of the disability community, parents, professionals, disabled people, and three of them have overlapped at least two of those roles. They discuss the “better dead than disabled” mentality, euthanasia, selective abortion (as a disability issue, not as a simplistic pro-choice/pro-life issue), eugenics, infanticide, institutionalization, and other stuff that makes many people run in horror. And they do it really well.

The Mad Movement

On Our Own Call Me Crazy Beyond Bedlam
The mad movement goes by many different names, and so do the people in it. Psychiatric survivor, ex-patient, lunatics’ liberation, mad movement, etc. The common element is people who have been in the psychiatric system, or could easily end up in the psychiatric system, or who are concerned about practices in the psychiatric system, doing everything from standing up for their own rights to calling for a complete replacement (rather than just “reform”) for the system. (Autistic people might want to take note that there are a lot of people like us involved in that movement, although given that movement’s rejection of most labels they view as psychiatric, few would identify as autistic.)

On Our Own tells Judi Chamberlin’s story and then gets into the injustices in the psychiatric system and how it can be changed. I was particularly interested to note a brief comparison, which I’ve seen in a lot of places, between Topeka State Hospital, which everyone knows to be a dump, and Menninger’s, which at the time was nearby and everyone knew to be wonderful. Someone who’d been to both said that Topeka State was physically brutal, but Menninger’s was “more destructive and painful” because it led to “total disintegration of personality and personal autonomy”. (This is something I’ve noticed about institutions as viewed by outsiders vs. insiders too, but few people who’ve never lived in them seem to understand what I mean.) I was also glad to notice that she questions what’s happened with a lot of professionals who have involved themselves in the “anti-psychiatry” movement while maintaining all the power structures that make psychiatry dangerous.

Call Me Crazy is Irit Shimrat’s story, along with interviews of other people in the mad movement, and their (often varying) political views. I was interested to note that Irit Shimrat faces a problem a lot of autistic self-advocates face: Although she was diagnosed with schizophrenia and has at one time or another had all the “symptoms” of it, people still try to tell her that she was misdiagnosed because her viewpoint on the helpfulness of psychiatry runs counter to what most people are told about it.

Beyond Bedlam is a collection of powerful essays and poems by women who’ve been in the psychiatric system. It includes an analysis of how the culture of psychotherapy contributed to making feminism much less effective. (That’s not all it includes, by a long shot, it’s just one of the many interesting things it includes.)

Professionals

I Witness Learning to Listen First Contact
Several years ago, another disability activist sent me a packet of photocopied information about disability rights issues. At the end, she had photocopied one page out of I Witness: History and a Person with a Developmental Disability. It was from the end. The author talks about how he often tells the story of the woman he interviews in the book. He says that invariably someone comes up to him and tells him that the woman he’s talking about “can’t be retarded” because she’s wise. And then he proceeds to say exactly how much prejudiced crap that is. So I had to get that book.

I Witness alternates chapters. One chapter will be an interview with “Noreen,” an old woman with a developmental disability who spent many years institutionalized. Then the next chapter will be the author’s reflections on what Noreen is telling him. And they’re pretty stunning reflections sometimes. He talks about how he once authorized the use of a cattle prod for “treatment of self-injury”, something he now can’t see as justified. He also talks about going to a play in which a bunch of developmentally disabled people announce that they’re not sick so they don’t need to be healed. And he talks about how Noreen taught him that community is more than a location.

Learning to Listen is about people, mainly developmentally disabled people, who are considered to have bad behavior (whatever the modern euphemism for that is). The book analyzes the entire social context around this behavior, rather than viewing “bad behavior” as a natural consequence of a diagnosis. I often recommend this book to parents.

I’d recommend all of Dave Hingsburger’s books that I’ve ever read, if I could. I Witness is one of them. But the book of his that I seem to refer to most often is the fairly tiny book First Contact. It’s about how to communicate, rather than just see a mirror of yourself in, other people. Specifically, it’s about the kind of people who get written off the most often of anyone. People known alternately as “low-grade retards”, “profoundly retarded”, “multiply handicapped”, “extremely low-functioning”, and “vegetative”. Hingsburger talks about his first acquaintances with people with these labels, his initial fear, bravado, arrogance, and mistakes in relating to them, and his eventual realization that they are real people, however different from him they are. He encourages people to relate to other people as other people rather than as projections of themselves. When people display “high functioning chauvinism,” intellectual elitism, claim that there’s no place in inclusion or self-advocacy or even life for “Those People,” and so forth, I refer them to this excellent little book. (Cal Montgomery reviewed it here. I’ll admit that when she reviews something, I tend to go out and find a copy. And her review sums up why I like his books so much.)

Self-Advocacy/Developmental Disabilities

New Voices Women With Intellectual Disabilities
New Voices is a chronicle of the international DD self-advocacy movement, including interviews with leaders in that movement. This is another movement that autistic people have probably had a lot of involvement in (it’s also another movement that’s often not very fond of “labeling”). And could learn a lot from. (Although I’d hate to see how all the “Autistics are worthwhile because we’re not retarded” folks would come across to people in this movement, who mostly have intellectual disabilities.)

Women with Intellectual Disabilities is written with the first part of each chapter in simple language and the second part in more complicated language in an attempt to make it more accessible to readers who need simplified language. There’s a bit of a problem with the fact that the simple language doesn’t always say the same thing the complicated language does, though. A lot of this book is not from the disabled people’s point of view, it’s studies of disabled people. But other parts include interviews or things written entirely by women with intellectual disabilities. It’s worth the whole book, though, just to read chapter eleven, “Gina’s Story,” an autobiographical monologue by Sonia Teuben, which I can’t really describe but I wish I could see it performed.

Physical Disability (Political)

Pride Against Prejudice Too Late to Die Young

This is one review of Pride Against Prejudice, which, as the reviewer says, is a feminist approach to disability, that takes on both feminism’s attitudes towards disabled women, and male-dominated disability rights movements’ views on the experience of disability. The result is a very interesting, detailed political analysis of disability and what happens to disabled people in the world.

The Me In the Mirror is an autobiography of Connie Panzarino, who grows up severely physically disabled, and eventually gets involved in the disability rights movement. It’s interesting both politically and in terms of how she views herself over time. The title of the book stems from the fact that she used to pass time by daydreaming that she could talk to herself in the mirror. Her mirror self could walk and claimed that she could too but just wasn’t trying, an idea that she believed, and felt guilty about, until her fifteenth birthday. Later in the book, when asked to take part in genetic research, she refuses on the grounds that she doesn’t want people like her and her sister eliminated from the planet. She also describes some interesting things about the MDA Telethon, including that they brought her on as a poster child, despite her not having muscular dystrophy, because they didn’t want to “tire out” kids with real muscular dystrophy, and then showed her how to look cute and beg with big eyes.

Too Late to Die Young is a collection of essays by Harriet McBryde Johnson, a disabled lawyer, that take the form of political autobiography and storytelling. She’s also the author of articles I may have linked to before, like The Disability Gulag and Unspeakable Conversations. She takes on a number of similarly weighty issues in the book.

Misc. Institution Stories

Annie's Coming Out The Spiral Staircase Lest We Forget
The packaging on my copy of Annie’s Coming Out makes it look like a bad “touching, inspirational story”. It’s really a story about injustice, and fighting injustice, and winning, and not winning. One of the co-authors, Anne McDonald, grew up in an institution with no means of communication understood by non-disabled people until she was 16. The other co-author helped McDonald and a number of other people in the institution to learn to type, some independently and some with assistance, and ended up in big trouble with the institution administration. Anne McDonald was allowed to get out after proving (at long last, after holding out in protest of the indignity of being expected to prove herself) that her typing was genuine, but other people who had been typing along with her were not allowed to type anymore. Some died in the institution.

The Spiral Staircase is one that I got while researching a presentation on institutions. It tells the story of how affected the author was by her years in a convent, and also her involvement with the psychiatric system. (Both the convent and the psychiatric system thought her epilepsy was an emotional problem, which stunned the neurologist who finally diagnosed her.) Her editors had made her write her previous book in an entirely positive light as to what leaving a convent meant in the real world, but since that book was not the truth, she went back and wrote this one.

Lest We Forget is another one I got because Cal Montgomery reviewed it. It’s an audio recording, including music and interviews with inmates of Ohio’s state developmental institutions, families, and professionals. I’ll let Cal’s review mostly speak for me on it because I haven’t quite figured out how to describe it.

About these ads

About Mel Baggs

I am a highly sensing person. I am a child of earth and water, I was born into a redwood forest and I left the forest but it never left me. I'm 34 as I wrote this. If I had an alignment like in role-playing games and MUDs, I'd be chaotic good all the way: I don't think it's possible to fill ethics into a moral code, the world is far too complex for that. I let the world be complex and chaotic and try to respond situation by situation from a small number of principles of right and wrong. My responses may seem to contradict each other, but that will be because either the situation has changed, or I have changed. I am a poet who is trying to practice more every day, hence the poetry blog. I am a cat lover and live with a wonderful elderly cat. I am a painter when I have the time, energy, and resources. I have multiple cognitive, physical, developmental, and psychiatric disabilities, and my health is not usually stable. Put all together, I'd be considered severely disabled. I get a lot of assistance throughout the day. I am a real living cyborg, part human part machine: I have a GJ feeding tube to feed me through one tube and drain my stomach through the other,, an InterStim implant for urinary retention, and a port (a permanent central IV line). I love life. I think Love (not the sentimental emotion, but the property of the world) is the most important thing that human beings can offer each other. Being near death enough times has taught me that, and has also taught me that I have no time for bullies or pettiness. I'm involved in disabilty rights and other causes that people these days would call 'social justice', but I don't consider myself part of the 'SJ community' or the 'anti-SJ community' because of that thing I said about pettiness -- they're more about one-upmanship than fixing the world. I wish they had not taken over the words 'social justice', which used to mean something else. I love talking to just ordinary people about fixing the world, they have far more realistic ideas and more likelihood of putting them into practice. I'm a Hufflepuff to the core, with some Gryffindor tendencies and even a little bit of Ravenclaw. I admire some Slytherins but I don't have much ambition or cunning at all. I still think the Slytherin common room is second best, with Hufflepuff coming first. My favorite color is brown, especially when combined with a bit of yellow or blue. My favorite music is country, and my favorite country artists are Kathy Mattea, Lacy J. Dalton, Kris Kristofferson and Rita Coolidge, Merle Haggard, and Loretta Lynn. I don't like most new country but i occasionally hear something on the radio I like. At an early age, my family listened to country almost exclusively to the point where I thought all the different types of country were all the different types of music! I couldn't put Lacy J. Dalton, Buffy Sainte-Marie, Dolly Parton, Merle Haggard, and Kris Kristofferson in the same category. Although now that I've grown up I can hear that they are all country, but as a kid my ear was trained more for minute differences in country styles, than for recognizing country from other types of music. Country isn't all I like. Some other bands and artists I like: The Cocteau Twins, Dead Can Dance, Rasputina, Jefferson Airplane, The Beatles, Rich Mullins (I'm not Christian but some Christian music is amazing), ), The Raventones/T.R. Kelley, Planet P Project/Tony Carey, Sinead Lohan, Donna Williams, Suzanne Vega, Phideaux, and Jethro Tull, to name a few. I love the Cocteau Twins in particular because they are everything being sensing is about: Words are chosen for their sound, not their meaning, the voice becomes yet another instrument rather than a conveyor of words, raw emotion pours out of them, there are layers upon layers, and they were around for long enough there's lots of their music in a variety of different styles -- including their later stuff where the words have more meaning than just sounds. Each period in their music has its benefits and drawbacks but I love them all, or nearly so. Their music comes as close as any music can come to conveying how I experience the world, as what Donna Williams calls 'pattern, form, and feel'. And Elizabeth Fraser has a beautiful voice, I once had a teenage crush on her. As I type this, I have a cat sitting on my shoulder, cheek to cheek with me, peering around and occasionally rubbing me. My relationship to her goes back 15 years to when she was six months old, and we've rarely been parted since. It's been an honor to watch her grow into a wise but crotchety old lady cat. She knows she's technically older than me and tells me so sometimes, especially during arguments. She has trouble with the fact that there are parts of the human world I know better than she does. She sees me as her big, dumb kitten who needs protecting, and is beside herself with worry if I end up in the hospital (which seems to happen frequently these days). I don't experience myself as having a gender identity, I call it being genderless. You'll sometimes see the pronouns sie and hir in my work, they are gender-neutral pronouns pronounced 'see' and 'hear'. I was raised female, which gives me both disadvantages (outside the trans community) and advantages (inside the trans community). You don't have to remember my pronouns, lots of people have trouble with gender-neutral pronouns. I won't be upset with you. People make mistakes, and some people just can't get the hang of new words, and that's okay. I have vocabulary problems myself (mostly comprehension), I'm not going to penalize other people for having vocabulary problems of their own. Right now my father is dying of cancer that's metastatized so many places they can't figure out where it started, my mother has severe myasthenia gravis that can land her in the ICU (and she's my father's primary caretaker), my "second mother" (who took over when I grew up and my family didn't know how to prepare me for the world) has endometrial cancer, and my cat is getting old. All of this is bringing death to the forefront of my mind and my poetry. In fact I think I've been able to write more poetry because of all the feelings about so many people dying or with precarious health. It was easier to handle when it was me that was going to die (averted by diagnosis and treatment of severe adrenal insufficiency that'd been going on for years). It's harder when it's someone else, someone you love. My other hobby is crocheting, and a lot of the time if I'm not writing, it'll be hard to find me without a crochet hook or occasional knitting needles in my hands. I love to be able to make things. I have been making hats and scarves with spare yarn (which I have a lot of), and putting them in City Hall Park wrapped in plastic, with notes saying "If you're cold, take this." I know what it's like to be cold in the winter, and if anyone takes them and stays warm I'd be overjoyed. You may have noticed I'm long-winded. This is actually the result of a language disability that makes it difficult for me to leave out details, to see two almost-identical things as perhaps something that doesn't need repeating, and to summarize or condense down my writing. I know this is a flaw in my writing, and it even prevents me from reading it sometimes, but I've found no solutions. Sometimes on my longer posts I'll put a "TL;DR" ("too long; didn''t read") summary at the end in bold letters for people to skip down to.. But even those don't feel adequate, even when I can do theme, which is not always. I think I'm getting better though. Learning haiku and other short poetry forms helps me condense my words better. Anyway, I hope that gives you enough idea of who I am. At my most basic, I care about Love more than anything (whenever I come near enough to death, I feel like I get asked the question "Did you Love, and did you express that Love properly?"), but like everyone I get sidetracked into things that are much less important. I try to make my writing an expression of Love. Sometimes I succeed.

9 responses »

  1. Thank you for this list.
    I am autistic and from the Netherlands and my five-star booklist would have at least 1 Dutch book on it, written by Martine Delfos. I think it is translated to English last year.

    Amanda, have you ever read any book or poem written by Birger Sellin ( a German autist, writing with FC).
    Both of his books are published in the early ’90. I don’t know whether they have been traslated (yet).

    Leonie.

  2. Wow!

    I love most of the books I’ve read, and the ones I haven’t read I hope to read whenever I can. Life’s too short not to read them.

    I love your point about stereotypes in the first autobiographies. I did not know what an autistic autobiography was like before 1992, so I opened Nobody Nowhere with open arms. I was also starting to get into the genre, but I had read Helen Keller before.

    What do you think of the Unwritten Rules of Social Relationships?

    Also, the modern books and the mad books are really great, and I like your choice of Annie’s Coming Out as well.

    I would probably add Axel Braun’s book to my own list.

    Yes, Birger Sellin’s books were translated in English, both of them. The translation is I Don’t Want to be Inside Me Anymore.

    The whole non-English area of autism books is REALLY worth exploring. There is Peeters and Vermullen from Belgium and the Netherlands respectively, and Gunilla Gerland too, who wrote A Real Person.

    Tell me more about the Martine Delfos book. Did she go to a mainstream school? And what is she doing in her life? I understand Europeans, Americans and Australians all have a different view, so it’s important to develop a WORLD view.

  3. I have a lot of non-English books (mainly German — Susanne Schäfer, Axel Brauns, Katja Rohde), but I can’t read them very well. (I also have several that were translated to English, but those are not among them.)

  4. Thank you – lots on there I wasn’t aware of. I had promised myself that I wouldn’t spend any more money on books – I think that’s gone out of the window!

  5. Stephen Wiltshire: Recent Works

    20 January – 11 March 2007
    Riverside Gallery, Richmond

    Following on from his phenomenally successful retrospective Not A Camera at Orleans House Gallery in 2003, one of the world’s most famous artistic autistic savants returns to Richmond to display recent works.

    The retrospective in 2003, presented drawings, paintings and prints spanning over two decades, many of which had never been shown to the public before and included recent commission of local views, including the distinct Octagon Room at Orleans House Gallery.

    The exhibition, which was opened by actress Jane Asher, Patron of the National Autistic Society, attracted international media and press coverage and 32,000 visitors in its ten week run. Many visitors had taken to their hearts the young teenager who had appeared in the 1987 BBC documentary The Foolish Wise Ones, but few knew what had happened to him since and how he had grown and flourished as an artist. Not A Camera helped to break down misconceptions about autism and Stephen as a passive ‘recorder’ of the world around him and also showcased emerging new talent including Zoe Kakolyris who has subsequently had solo exhibitions in London.

    After Not A Camera, Stephen continued creating and has travelled widely – including trips to Europe and Japan last year. He was honoured by the Queen last year and received an MBE for his services to the arts. In the autumn of 2006, Stephen opened his very own successful gallery in the heart of London and visits there twice a week to meet the public.

    The new exhibition at the Riverside Gallery in central Richmond carries on where the previous exhibition left off and shows urban landscapes created over the last two years. The showpiece of the exhibition is a reproduction of a panorama of the Tokyo skyline – the original is over ten feet long – and also a panorama of Rome. These new works, on a far grander scale, are bold, confident and show Stephen’s virtuosity and fluid control to the greatest extent.

    An exhibition not to be missed!
    Original works will be available for sale alongside prints and postcards.

    Riverside Gallery, Old Town Hall, Whittaker Avenue, Richmond
    Opening hours: Monday, Thursday, Friday: 10.00-6.00; Tuesday: 10.00-5.00pm; Wednesday 10.00-8.00pm and Saturday: 10.00-5.00pm
    Admission is Free
    tel: 020 8831 6000
    websites: http://www.richmond.gov.uk/exhibitions & http://www.stephenwiltshire.co.uk/
    email: galleryinfo@richmond.gov.uk

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s