Nothing About Us Without Us

Across Ireland and the rest of the world, the struggle for disability rights has continued for a long time. One of the activists involved in the early days of the Irish movement, Suzy Byrne, shared with Beatrice Fanucci why it is essential that the voices of those affected should be the ones to lead the charge.

While the first small groups fighting for disability rights emerged in the 1800s, it was only in the 1900s that stronger advocacy started to take place. In many parts of the world, this struggle followed similar patterns to many other civil rights movements: challenging harmful stereotypes, campaigning for institutional change and rallying for the selfdetermination of a minority community.

In Ireland, disability rights activism in terms of identity politics began in the early 1990s. And in its history, as Irish disability rights activist Suzy Byrne put it, “There have been lots of organisations for disabled people, but not of disabled people.”

Before the 1990s, in Ireland “you would have had organisations that were condition-specific, and where families and friends of disabled people came together, often setting up services to support people.”

People like disability rights campaigner Dónal Toolan changed the course of the movement, demanding that disabled people be accorded the right to be their own advocates. He started by fighting for simple rights, like “the right for a disabled person to vote without having to have a medical certificate saying they had capacity”. He went on to found the Forum of People with Disabilities, challenging the charity model that characterised the disability sector to ensure that disabled people could have their voice heard.

“Disability has always been a charity model,” Suzy explained. “So if it wasn't the Church, it was some other organisation that was founded as a charity” that provided support for disabled people. “The big difficulty in having disabled people be seen as rights holders, and individuals in their own space, has been this charity concept around disability. This [belief that] ‘they can't look after themselves, they can't make decisions for themselves, they can't speak for themselves’.”

This issue has always been at the core of disability rights activism. For years, the slogan ‘Nothing About Us Without Us’ has been used within the disability rights movement to communicate the idea that no policy or decision impacting the lives of a certain group should be made without the direct participation of members of said groups.

“It's always been so difficult to create spaces for disabled people to chart their own course, to develop their own politics and their own movements and identity,” Suzy said. “No matter how society changes or becomes more accessible, there will always be barriers. The only people that know those barriers are disabled people themselves and we need to be involved in the discussions and leading the discussions about our issues rather than your family carers. Yes, they advocate on behalf of disabled people, but they are carers. They're not disabled people.”

However, too often disabled people are left out of conversations that directly impact their lives. “Ireland signed the United Nations Convention on the Rights of People with Disabilities in 2007, but didn't ratify it until 2018. Our legislation has been very piecemeal, around disability rights,” Suzy explained. The ratification of the convention can be thought of as a promise from the government that it will implement new policies and laws to ensure that disabled people can enjoy the rights set out in the convention. However, six years later, the convention is yet to be implemented. “Even though we have the UN Convention, and we have disability legislation, disabled people don't have a right to determine their own lives.”

Disability rights activists have been fighting for their right to self-determination for the longest time. Which is why, Suzy said, “most people who are involved in disability activism become ‘accidental activists’.” This is something Suzy equated happens to a lot of LGBTQ+ people as well- “You might be politically motivated to do something, but often you're doing something to create change for yourself.”

Speaking about her own activism, Suzy recalled approaching the disability rights movement from a different perspective. “I was involved in LGBTQ+ politics in the early ‘90s. I was co-chair of GLEN around the time of decriminalisation. We worked with other minority groups seeking the introduction of anti-discrimination legislation across the main grounds. That, for me, was an introduction to disability,” she explained. “As a disabled person, I didn't really identify as somebody with a disability, I found it difficult. It was much easier coming out as a lesbian.”

Her LGBTQ+ activism and her disability rights activism intersected again years later, in the early 2000s, when she joined forces with Dónal Toolan, Declan O'Keefe and others to form Delicious- “a group of disabled queers” who met in Trinity College. “We were trying to support each other, number one, but also trying to see how we could raise issues around sexuality within the disability sphere and disability in the LGBTQ+ sphere.”

The group worked with the Equality Authority who held a seminar on LGBTQ+ disability issues to explore intersectionality. They also worked with the National Disability Authority on a report to explore the needs of LGBTQ+ people with disability.

Recalling what it was like for queer disabled people at the time, Suzy said: “People were really concerned about the fact that they were receiving personal assistance and support from people who might discriminate against them. “People were afraid to come out, because they felt that people wouldn't work with them, because they were relying on people to support them, to come every day to their house to get them up in the morning and to provide access to them.

“I think things have changed quite a bit and people are more open and honest. But it's still an important issue. Particularly if you are young and coming out and just getting your independence. You want to know that those around you will respect you and your wishes, and your identity.”

This was the reason why the Delicious group was formed. “We were trying to call on organisations in both spaces to be inclusive and to be respectful,” Suzy said. “At that stage, the queer community wasn't accessible. It still isn't, in most places, both commercial and non-commercial spaces.

“Even now, when you want to access Pride or other events or services that the LGBTQ+ community provides, it isn't a given that access will be the first thing on the agenda. It always seems to have to be fought for. And that's a difficult space for activists to be in. Always having to say, ‘I can't come there, if it's not accessible’,” Suzy continued. “It's very tiring to constantly be raising those issues. You don't want to be seen as the person that has to raise them. You just want to get on with your life, get out and meet somebody, have fun. Do all the normal things.

“We need to ensure that people with disabilities do not have to beg for the supports that they require. That they are asked what supports they require, rather than having to go seeking supports. That it's something that is a life course approach, that your needs change as you age, and that your life circumstances change. So your accessibility issues change.”

Suzy also spoke about the recent referendums on Family and Care, when in the lead-up to voting day on March 8, there had been extensive debate, especially online. Several disability and carers groups raised serious concerns about the negative consequences that a Yes vote in the Care referendum could have. Many voiced opposition on the basis that the proposed wording did not adequately hold the State accountable for the provision of care and only limited options to provide and receive care to the family.

“We have created an institution of the family and an expectation that disabled people will stay with their families rather than move into independence,” Suzy said. “You cannot put something into the Constitution that only locates care within the family.”

Especially considering that, as the LGBTQ+ community is all too aware, sometimes care in the family is not even an option because it’s there that the prejudice and alienation start. We need a system that allows care to take different forms and adapt to different circumstances to ensure that everyone, be it queer people, migrants, elderly people and everyone else who doesn’t have a family who supports them, can have access to it.

When asked about the future of disability rights, Suzy said: “There are some great things happening amongst disabled people's organisations, and there are great younger people.

“I'm not an activist in the disabled space really anymore. I sit in the background, watch, and support and mentor and whatever. But there's some great people doing things to try and ensure that disabled people are being seen as individuals in charge of their own lives. And it's great to watch that happen.”