Women, disableism and literature

In my last blog post I analysed why disabled women are invisible in New Zealand. This time, since I am joining other bloggers around the world on Blogging against Disableism Day, I have selected a subject which, as a disabled woman, is dear to me.

Being denied something which is generally of value to others is disableism, (discrimination,) at work, intentional or not. This is particularly true for those of us born with disabilities growing up.

Children and young people as they grow see similar life experience to their own life experience reflected around them through all kinds of media. It helps them find out who they are, and how they want to be in the world, good or bad. If they love reading good books they will probably meet a range of life experience, similar and dissimilar to their own in books.

Disabled children are denied this experience. Problematic “inspiration porn” and other negative media depictions aside, there are few, if any, good books written from their perspective by disabled authors who understand this experience of growing up with a disability at a very deep human level. Disability is constructed differently in different societies. It is constructed from a generally unchallenged non-disabled perspective in western literature. There is no body of literature or debate beyond a struggling academia to support any change, at least in New Zealand.

I do wish I could find similar life experiences to mine reflected in our literature. It was bad enough growing up without New Zealand books as my generation did. But I often experienced feelings of isolation as I didn’t know anyone like myself. Nor could I read about anyone like me, except Helen Keller, whose life experience was light years away from mine, in ways other than time, geography and personal circumstances. Even her impairment was promoted as a non-disabled construct and largely remains so.

Mental illness does seem to be an exception to the rule of silence. Charlotte Perkins Gilman’s The Yellow Wallpaper is a powerful example. Closer to home I have of course read Janet Frame’s early books. But there is now a climate of denial around her experience. Whether or not she was mentally ill, she still had the searing experience of being labelled and treated as disabled. I am also interested in the experience of Robin Hyde, although some of her writing is out of print and not accessible. At that time she probably would not identify as disabled, a fairly modern concept.

Disabled Women’s experience is starting to be reflected in dance, and in art and crafts, although disabled artists are often referred to as “outsider” artists, which I don’t like. Another less discriminatory term should be used.

Literature seems to be more difficult to infiltrate here. While I can find some international non-fiction about disabled women’s experience, often academic, I long for some general well-written, thoughtful, crunchy, insightful and satisfying everyday accounts of lives lived in the modern everyday world of disabled women, whatever that might be.

Self-publishing may not be the answer either, as I have seen too many poorly written edited and presented books telling “inspirational” life stories. They are frequently self-absorbed and undisciplined.  Doris Lessing’s description of the writing process is my favourite. She says,

“The whole process of writing is a setting at a distance. That is the value of it – to the writer and to the people who read the results of this process, which takes the raw, the individual, the uncriticised, the unexamined, into the realm of the general.”

Has no New Zealand publisher ever seen such a manuscript written by a disabled woman on the subject of the lives of disabled women? Has none ever been written, or do publishers think there is no market for such books? This situation needs to change.

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Disabled women Invisible in New Zealand

Several events lately have caused me to reflect on the invisibility of disabled women in New Zealand, and to think about how that might change. This year is the 120th anniversary of women’s suffrage in New Zealand. The Women’s Studies Association conference will be held in Wellington this weekend. I won’t be attending. What follows explains why.

Interests and rights neglected

The interests and rights of disabled women have been neglected by the women’s movement and successive New Zealand governments for many years. In my long history of working in the disability world, and of disability activism I have been frustrated by the lack of any real inclusion of disabled women in women’s rights initiatives and progress.

The few initiatives have never been sustained or updated, or been retained in the collective consciousness, so every time a group of women with the least power and energy, and the least access to resources wants to do something they have to start from scratch. Those of us who have attempted action have been met with indifference, opposition, and even hostility, sometimes from our own community.

It is discouraging to note that our issues are still subsumed either into those of disability generally, or into women generally, thereby becoming invisible. While other intersections such as race, poverty and LGBT are now being explored, disabled women are still not in that loop. Disabled women are often invisible within these intersections as well.

Left off the agenda

It isn’t for want of trying on the part of many of us. Yet it is extremely hard to get on to the feminist, or any other agenda for that matter. It is so hard to find any useful data or relevant research, especially where our situation can be compared to non-disabled women. Feminist academics and writers studiously ignore our experience and perspective in their work. There is little comparative data available on almost anything. Attempts to find or create any are ignored. An example – Despite the length of time these programmes have been available it is impossible to find any information on disabled women’s access to and uptake of cervical screening and mammography programmes compared to non-disabled women. Research and related contributions by disabled women to a funded research programme into violence against women was strongly resisted, and the results reflected this.

Systemic discrimination

Does no one care that birth mothers who are disabled women can still have their children taken from them simply because they are disabled, or disabled mothers are more likely to have their children seen to be ‘at risk” and taken away by CYF, or that disabled men are able to adopt with non-disabled partners but disabled women with non-disabled partners can’t?

Analysing the problem

We have to find answers to this question of invisibility of disabled women and our issues.

Here is an attempt to start to tease out the problem:

Systemic

  • There is a lack of access in the broadest sense of disabled women to information and to the debate. (Disabled women in Australia have just produced a report on the digital Divide for disabled women.)
  • New age ideas that we are all individually responsible for our own destinies and disability is our own fault. See also some religion.
  • Policy makers and activists don’t see intersections, or see them as too hard.
  • Our sexuality and rights to be mothers are not recognised by systems, structures and policy implementation.
  • Disability itself is not a “sexy” issue, never mind disability and gender.
  • Agencies with responsibility for all women take little or no account of disabled women.
  • Lack of political will.

Feminism

  • Does feminism itself disable us?
  • The work of the few disabled feminist researchers is not valued as “real” feminism or “real” research.
  • The personal is political has excluded and denied our experience.

Other women/feminists

  • Feminists in the “caring” professions are part of the problem, and issues for carers eclipse ours.
  • Feminist writers and academics ignore us, our place and our experience. Their research is from a non-disabled perspective.
  • Non-disabled women construct gender and disability in different ways from disabled women. These constructs are damaging and disempowering.
  • We are not “real” women so we can be safely ignored.
  • Our experience of the behaviour of non-disabled feminists indicates they are ambivalent about disabled women and our issues.
  • Other intersections such as race and class “trump” disability when the chips are down.
  • A perception by other women that we are “less than them” and might drag the cause down or cost too much, or make women generally seem “not able.”
  • Perhaps we represent some kind of atavistic reminder of something seen as dreadful and unwomanly – even as feminists age or acquire impairments they don’t generally apply feminist analysis to their disability status.
  • Body and other differences are problematic.

Disabled women ourselves

  • Our impairments mean we don’t have the energy of other women.
  • There is a lack of our own discourse on disability and feminism.
  • Are disabled women too busy just surviving, or too apathetic?
  • In a small country we are isolated from each other and don’t have enough critical mass.
  • We are seduced by individualistic approaches to progress.

Disability

  • The siloed way disability services and resources have been and still are provided – divide and rule – has led to disunity and insularity in our own community of disabled people and of disabled women.
  • Disabled women leaders have been expected to lead all disabled people, not just women.
  • There is competition among impairment groups that diminishes energy and dilutes resolve and direction.

Is it about systemic issues? Is it about us, disabled women, or is it about other women and feminists? Or is it a bit of both, or all of the above. Or just maybe no one else cares, and I am wasting my time and energy.

This is a big picture view and I am not criticising any individual, including a few staunch allies, or any initiatives. I want to break this resounding silence once and for all, and begin some genuine, constructive and respectful discussion to find real answers to this problem of invisibility which I am beginning to fear won’t be solved in my lifetime.

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Tribes at Circa

Yesterday we attended Tribes at Circa theatre in Wellington. I nearly didn’t bother to go, but I am so glad I did. The play is about Billy, a young deaf man and his rather dysfunctional family and other relationships. I love theatre, and I particularly love plays that make me think, make me laugh, and leave me feeling satisfied. Tribes met all those requirements.

It is about finding a “voice”, as each of us needs to do, and belonging. But it is also about being Deaf as opposed to deaf. Tribes scrutinises identity and the ways we communicate with and understand each other on deeper levels.  Exploration of family dynamics around a member who is “different” is subtle and perceptive. Each family member constructs that “difference” in their own way. Tribes explores with moving insight the issues for those of us born with impairments, and those who acquire them later. I can relate to all of that that at a deeply personal level.

The play shows that Sign Language is a subtle and beautiful language, and that Deaf people are not the only ones for whom it can be a essential channel of communication.

Finding identity may not always result in happy ever afters. We discover that communities can be closed, insular in outlook and incestuous – “Everyone has slept with everyone else.” Sylvia says of the Deaf community.

At times I found the necessity to read captions and miss facial expression frustrating. That is my vision impairment.

But don’t think that this is some kind of worthy, earnest preachy play. It isn’t. It is original, funny, award-winning theatre, devoid of sentimentality or mawkishness. I enjoyed it very much.  Deaf and hearing, disabled and non-disabled theatregoers will find Tribes is challenging, entertaining and enriching.

It is unthinkable that that such a play would be denied translation into New Zealand Sign Language. Theatre, including Sign Language is a central and fundamental part of our cultural expression and heritage.

The NZSL interpreted performance of Tribes will be on Friday, 3 May at 8pm.

Tribes is on at Circa Theatre until May 4. Circa is accessible.

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New Zealand Book Month – Include everyone

March is New Zealand Book month It is a great initiative. Encouraging people to read our own books is important. Last year during NZ Book Month I blogged The e-reader versus the “real” book.  In whatever format, reading a book is an enriching experience.

Despite the inducement of a five dollar book token there are still people in New Zealand who are denied the delight of reading a book.

Even with the inclusion of e-books, only seven per cent of printed material is available to print-disabled people in New Zealand.

Print-disabled people include blind and low vision people, some Deaf, (for whom written English is their second language to NZ Sign Language,) people with dyslexia, people with other learning disabilities and those who physically can’t hold a book, or whose medication inhibits concentration. This is a sizeable group of people.

Wouldn’t it be great if NZ book month focused on the whole range of book formats and readers? How about a blind or deaf ambassador? I’m sure one of those terrific medal-winning Paralympians could be found to do it. How about encouraging a whole range of print-disabled people to read New Zealand books in all formats along with everyone else?

This group of readers are often forgotten by mainstream publishers and book people generally, but, with an aging population and more disabled children attending their local schools this is a growing audience, (and market,) who deserve better. Encourage them too! Everyone should have the right to read.

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