Anne McDonald
For people without speech, talking is often dependent on the generosity of others, either in providing interpretation or facilitation or in giving up time to listen. While this is inevitable, there needs to be an irreducible right to make one's opinions known on issues concerning your future well-being.
At the moment social conversation and medical consent are equal in the sight of the law, both depending on the accidental availability of communication partners with the necessary skills and commitment.
There is no right to be heard. There is no right to an interpreter. There is no obligation to listen.
While social interactions are always dependent on
the
politeness and
tolerance of individuals, it should be possible to legislate for
in formal situations such as courts, hospitals and schools. Without such legally enforceable rights, people without speech will be at the mercy of decision-makers who can arbitrarily decide to disallow communication.
I also support the right to literacy, as set out here:
All persons, regardless of the extent or severity of their disabilities, have a basic right to use print.
Beyond this general right, there are certain literacy rights that should be assured for all persons.
These basic rights are the following:
1. The right to an opportunity to learn to read and write. Opportunity involves engagement in
active participation in tasks performed with high success.
2. The right to have accessible, clear, meaningful, culturally and linguistically appropriate texts at all
times. Texts, broadly defined, range from picture books to newspapers to novels, cereal boxes, and
electronic documents.
3. The right to interact with others while reading, writing, or listening to a text. Interaction involves
questions, comments, discussions, and other communications about or related to the text.
4. The right to life choices made available through reading and writing competencies. Life choices
include, but are not limited to, employment and employment changes, independence, community
participation, and self-advocacy.
5. The right to lifelong educational opportunities incorporating literacy instruction and use. Literacy
educational opportunities, regardless of when they are provided, have potential to provide power that
cannot be taken away.
6. The right to have teachers and other service providers who are knowledgeable about literacy
instruction methods and principles. Methods include, but are not limited to, instruction, assessment,
and the technologies required to make literacy accessible to individuals with disabilities. Principles
include, but are not limited to, the beliefs that literacy is learned across places and time, and no person
is too disabled to benefit from literacy learning opportunities.
7. The right to live and learn in environments that provide varied models of print use. Models are
demonstrations of purposeful print use such as reading a recipe, paying bills, sharing a joke, or writing
a letter.
A Literacy Bill Of Rights. (from Erickson, K., Koppenhaver, D., &Yoder, D. E. (2002), Waves of Words:
If you're interested in my
other work, check these out....
If you want to know about my years in hell, try St.
Nicholas Hospital.
If you want to know what it did to me, read My
Frankenstein.
If you want to know what I think of euthanasia, read this.
If you want to know more about my story, read the book
I wrote
with
Rosemary Crossley - Annie's Coming Out, Penguin Books.
It's out of print, but second-hand copies are available on Amazon
and Alibris.
If you want to know how I got out, look up Facilitated
Communication Training.
If you want to know why communication is so important, read The
Right to Communicate.
And read about the
people who are trying to stop it.
And there's my work on The
Terrible Triple C, another one of
the ways in which professionals bastardize people with disability.
If you want to know how I enjoy myself, watch this.
Here are a few links
to friends.
I also work for DEAL and CAUS, and speak on issues of
disability. For my most recent articles on people without
speech being bastardized see No
Angel and Buried
Alive.
I was honoured to be awarded a National
Disability Award
in 2008, for Personal Achievement: I don't really believe in personal
achievement in this area, though, and I was rude enough to make a rabblerousing
speech at the awards ceremony.
If you want to contribute something yourself, give some
money to DEAL; they're working to see
that nobody is left without a voice.
Back to the home page and start
again...
Warning: there is quite a bit of overlap between these
articles. When you take as long as I do to spell a sentence you
use it as often as you can, and the hell with repetition.