A fierce advocate for disability rights

Samantha Connor has a strong track record as a disability and human rights advocate and is a passionate believer that disabled people have the right to be unapologetic in taking up space in the world. She is this week’s Changemaker.

When Samantha Connor was 11 years old, her best friend was shot in the back of the neck and became a quadriplegic. 

Seeing how much her friend’s life changed after becoming a disabled person, is something Connor credits – alongside an outsized sense of social justice – with her desire to work in the disability sector.

Connor is also a disabled woman herself. She is autistic, has ADHD and muscular dystrophy and uses a wheelchair for mobility.

Professionally, she wears many hats. According to her Twitter bio, which she says pretty much sums her up, she is “a human and disability rights activist, cofounder of bolshy divas and [activist group] CripArmy, a line-jumper, social media assassin, cripchick and president of People With Disability Australia (PWDA)”.

Connor says she’s “not backwards in coming forwards” which is why she believes she was elected president of Australia’s peak advocacy organisation for people with disability, as the current times need outspoken advocates and activists.

In this week’s Changemaker, she talks about how great the disability community is, what it was like to achieve her career goals and why every day should be a day for people with disability.

How did you start working in the disability advocacy space?

Gosh, it’s always difficult to say “how did I end up here”. But I’m autistic and have ADHD, so I have lots of energy. And then I also have an outsized sense of social justice and fairness. I’m also a manual wheelchair user, as I have a condition called muscular dystrophy. And then I also have six children. I have one child out of all of the children, who we call “the special one”, who doesn’t have a disability or mental health condition of any kind. And so we had the usual kind of battles that parents and carers have with schools and that kind of thing.

But probably the key thing that informed me in becoming somebody who works full-time in the disability sector is that when I was 11 years old, my best friend was shot in the back of the neck and went to live in an institution. He was also 11, and he became a quadriplegic. The difference in his life from being this sort of good-looking, popular, academic, athletic boy at school to being a disabled person, was really shocking to me. And I think that was probably the thing that made me determined to make change. 

What do you like best about your work?

My community, absolutely. Friday was International Day of People With Disability. We have such a diverse, rich and extraordinary community. One of the things that we [at PWDA] always say is that we want to help people to have an ordinary life, but I don’t know anybody with a disability who has an ordinary life. They have extraordinary lives, for a bunch of reasons.

The community is supportive and the peer mentoring in our community is just exceptional. We’ve come together to fight against adverse policy this year around independent assessments, and some of the other changes that have been proposed, and when you see an entire body of people rise up together, it’s an extraordinary thing.

As you mentioned, Friday was the International Day of People with Disability. How important is it to have a day that recognises the community? 

I think it’s sometimes hijacked by the people that support us who other people mistake as being the actual disability community. The day should actually be about people with a disability. It shouldn’t be about people who want to make money from us, or people who support us, it should be about recognising people with a disability.

Also I do think it’s an important thing, but really it shouldn’t just be one day. It should be every day that people with disability are included in mainstream society. We shouldn’t just have one day where we’re recognised and seen and allowed to take up space in the world.

What are your priorities for the coming year?

Oh gosh, I think for every person with a disability right now it’s just to get through it. It has been so difficult, especially with COVID, we just seem to be fighting all the time. If I was going to be talking about New Year’s resolutions, I’d be hoping that government would be more transparent, that we would get the uncertainty that is in government sorted, and that we have less of an acrimonious relationship and are able to work more productively. Because realistically we’ve been fighting government changes, which have been put in place during a time which is the most dangerous and difficult time in the history of this generation of disabled people. So I’m hoping that we can move forward more productively next year and not have to constantly be fighting because we’re all exhausted. 

We really want to make sure that people with disability are able to be employed, that they don’t have to fight to get basic support, and that our rights are upheld. We already have rights, they should just be upheld under domestic legislation.

Do you have any advice for other people who might be looking to work in the disability advocacy space about how to get involved? 

Yeah. So at People With Disability Australia, operations are segregated by systemic and individualised advocacy. So individualised advocacy is where we have a team of highly-skilled advocates who are working one-on-one with people with disability who have a range of different needs – it might be NDIS, it might be housing or DSP [disability support pension]. They just need someone to walk alongside them, to give them expert advice and to help them advocate for themselves. And then systemic advocacy is more about the big systemic issues, which affect everybody. So we do both of those things. 

It really depends. If you’re a person who wants to help people one-on-one and if you’re a person who has a track record of being good at researching, good at understanding community support, good at understanding the needs of people with disability, then an individualised advocacy organisation would be a great start. Usually people come in through social worker pathways, not always though. 

And then if you want to be someone who fights for the rights of people with disability, it’s just understanding the United Nations Convention on the Rights of Persons with Disabilities and the mechanisms that are put in place to uphold them, and knowing what sort of issues people with disability face.

And for you personally Samantha, do you have a career goal or an idea of what success in your career would look like for you?

I think I have goals which are reactive and responsive because of the nature of disability rights and the fights that we have in Australia. But I think some of my career goals have been achieved.

A few years ago, one of the things that we’d been fighting for for about 20 years, was a royal commission into the rights of people with disability. And so I was really proud to play a part in that. 

I remember, I saw Christian Porter on television saying that we wouldn’t have a royal commission. We had been fighting for so long. In 2016 we all told our stories to the Senate for the inquiry into disability and violence, and I’d run projects where I’d conducted inquiries into the deaths of people with disability, and we experienced this over and over again. And there was a key window where we could actually go to Canberra. And so I cracked it and said, “right, I’m getting on a plane this afternoon”. And I put it on Facebook. Remarkably, other disabled people said, “Well, we’re going to get on a plane too”. 

So we had about 30 people coming into Parliament House in Canberra from all over the country. There were wheelchairs that were lost. Monica [McGhie] has no arms, no legs, and she turned up in a Qantas chair because [they said her wheelchair wouldn’t fit on the plane]. [Greens Senator] Jordon Steele-John very generously gave us use of the Greens Party room to congregate in. And so we had this sea of angry, disabled people turning up at parliament. We had meetings with people all over. Tanya Plibersek and Bill Shorten made space for us, and we had this enormous room full of people to talk about the need for a disability royal commission. And by the end of the day, they’d made the decision to have a commission – the most expensive royal commission in history.

So it was one of those things that we fought for for a long time. It’s very rare that you actually see the end of your goals in advocacy spaces. So I think that was something that I could say, “well I played a part in that”.