Recently a third year student at the University of Winchester studying Theatre Production (Arts & Stage Management) contacted me. Her focal topic is looking at "able bodied performers portraying disabled [people] and how we, as participants in the arts industry, feel about it."
She sent me some questions and here's how I responded:
Autonomy is often used to mean independence. Though their dictionary definitions are similar and they are synonyms of each other, I like to talk about autonomy in a slighty different way.
For me, autonomy is having the choice over when I am independent and when I am dependent. It's similar to the notion of interdependence, except the latter, interdependence, suggests an ongoing process of co-operation or collaboration. Perhaps autonomy could include the choice of interdependence as well, but for now I want to focus on the aspect of choice.
"Who We Are" is a music video with a vision of changing how we know ourselves & each other. It's all about us, made for the world to see.
Follow Jess and her friends as they explore and celebrate identity and self expression. They are young people with unique gender, sexual and functional expression who are proud of who they are.
Last Sunday I emailed Paul Gibson, Disability Commissioner at the Human Rights Commission about two recent cases of disability-related discrimination by Immigration New Zealand. I've had no reply so I thought I'd make it an open letter. Please feel free to use this as a template to also email Paul — firstname.lastname@example.org
I am concerned by the ethical argument brewing between the parents of Charley Hooper — who have finished a series of surgeries and hormone therapy to contain her growth and development — and disability/human rights advocates like Disability Rights Commisioner Paul Gibson — who has said the procedure was "unnecessary" and "inconsistent with the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD)."
The Hoopers say they have "no regrets" about stopping the growth of their daughter — who "has less control over her body than a newborn, with no head control and no purposeful movement of any limbs. She is blind and does not recognise anyone, including her parents." The procedure has also stopped Charley from having 200 seizures per day and has resulted in her smiling for the first time.
Gibson is calling for a law change to protect the rights of disabled children as a result of the Hooper situation. But whose call is it to define the "rights" and "protection" of children in circumstances such as this?
I got a fair bit of flack for the post I wrote on Friday, asking disabled people to toughen up and stop telling their stories of hardship in public. I also criticised inspirational speakers, as well as media portrayal of disabled people triumphantly doing ordinary things.
I'm not used to the kind of negative vitriole with which a few people responded — it was quite affronting and upsetting. Nevertheless, I should note, my disparaging audience was balanced ten-fold by those who liked the post. I've been reflecting on the reason for the offence and, prompted by a question by a more balanced commenter, why I feel so strongly about this issue. After all, strong reactions are mainly fuelled by psychological projection.
So, what I wrote was about me, not about the people I criticised. To answer the question, "Why is it affecting you personally so strongly?" I've reflected on what's going on for me.
I've been busy the last few weeks so I haven't had time to blog for a while. This is a quickie to keep Google happy and it's a bit of a gripe.
I want disabled people, people with disabilities, impairments, invisible or otherwise, to harden up.
Not in a "don't express your feelings" way but in a "if we're ever going to be accommodated in the world, we've got to stop portraying ourselves publicly as traumatically wounded, emotionally over-dramatic, irritatingly inspirational and sensationally triumphant" way.
This week the Needs Assessment and Service Co-ordination Association (NASCA) held its national forum. According to its website, "NASCA provides leadership, assistance and peer support to NASC agencies throughout Aotearoa/New Zealand. NASC services are contracted by the Ministry of Health or District Health Boards to serve people with disabilities, people with mental health issues and older people needing age-related support."
I was invited to present the keynote plenary session on the first morning, providing a client's perspective. This, I explained in my introduction, was interesting given my well-known disdain for the NASC process. I assumed therefore, that I hadn't been invited to give a pep talk — instead, I offered some critical analysis, drawing on the following model:
I asked my audience to embrace this mindset, as well as promising to do the same.
This is the submission I made recently to the Productivity Commission's Inquiry into More Effective Social Services, in response to Chapter 11: Client choice and empowerment. Submissions closed in June.
I am Managing Director of Diversity New Zealand Ltd. I am recognised in New Zealand and overseas as a social and creative entrepreneur with fifteen years’ experience as a professional, award-winning comedian. My company works to develop capacity in individuals, teams, organisations and communities in the areas of leadership, diversity, complexity and change.
I use Individualised Funding (IF) to manage my support.
Following on from my last post about rebranding, I’ve also changed how I describe myself or, more accurately, my experience. I talk about "my paradoxical experience as a queer, caucasian, cisgender man with unique function (disability).”
Even doing this is paradoxical, given I argued the point in 2012 at TEDxAuckland that we need to decay labels to reveal diversity. But I’m doing it to explain a phenomenon of power, privilege and paradox, rather than to label myself.
Power and privilege have long been part of the politics of diversity and discrimination. Recently I heard another diversity expert, Leslie Hawthorne, encourage those with privilege to raise awareness of it by, for example, not using the word “lame" to describe something that is bad or stupid, because you are implying that people who can’t walk are bad or stupid*.