EXPERIENCE – Community worker never felt so empowered

Sheila* is the parent of a child with an intellectual disability who has been changed by joining voluntary advocacy group ‘Before We Die’. She is also a community worker which gives her an unique perspective.

The group, set up only a few months ago, already has nearly a thousand members in its closed Facebook group. It is also connecting on other platforms. Due to her line of work she prefers to use a pseudonym*.

Not surprisingly, rather than trying as she had in the past to advocate for her daughter by herself, she finds comfort in taking collective action as a member of a group. She said members of the group all felt “marginalised and exhausted” before joining.

“We also felt intimidated by service providers and statutory agencies. That makes people feel isolated, voiceless and very powerless. So it’s inspiring when you’re a member of a group that can suddenly reach out to government departments and meet members of the Dáil – the leadership is very inspiring and people feel very well represented.

She like other members I spoke to is angry that “in such a wealthy country people have been living in such poor circumstances.”

“I get a bit emotional when I think about it, because we had been trying to get on with things behind the scenes as best we could and keep our heads down.

“Being told (by the state) that we don’t have any residential place for your daughter over and over again has an impact.

“After you come through the process of raising someone with an intellectual disability, how difficult it is to get assessments and placements and all that. And then you get to adult age and you’re told the same – there’s a lack of resources, but it’s worse. You just become really browbeaten.

“So to discover this ‘Before We Die’ campaign, and to hear other people’s stories and to identify with them, it always lightens up the dark spots of yourself that you’ve denied and kept in the shadows. When you listen to others you say, ‘That is my story as well’. While I’m younger than a lot of the other parents, I’m actually not able to do this for much longer.”

“I now know that people are backing me, supporting me, understanding me, agreeing with me – that it wasn’t just me expecting too much – that actually the services are not okay. Being believed and nodded at and smiled at and comforted; it’s like a warm blanket. It also gives you a great blast of energy and the appropriate level of outrage. This is probably the most empowered I’ve felt in my entire life.

“Being part of this group has made me more assertive and less tolerant of things that shouldn’t be tolerated.

“And yet the pushback still exists, it’s still real, there’s still a denial by the state of their obligations. What happens when we die? That’s what this campaign is about.

Activism versus state-funded community work

Reflecting on her paid role as a community worker she says advocacy on behalf of others is difficult nowadays.

“There are restrictions in your employment, especially if you are funded by a government agency. It’s very hard to have a voice in reality because you’re afraid to bite the hand that feeds you. Even Section 38 and Section 39 groups who aren’t being properly funded aren’t able to go out and scream as loudly as they want to, on behalf of service users, because they’re afraid they will be penalised in some way.

“At work I can’t just speak out on behalf of groups. I have to go to a board of management and ask ‘Can I say this or that?’. You have to work through statutory agencies and you need to maintain relationships, you can’t go stepping on toes, or you might not get funded the next time round.

“By comparison, there isn’t any of that risk in the ‘Before We Die’ campaign. This is totally different. We have nothing to lose because things are already so bad,” said Sheila.

Kathy Sinnott role model

She often thinks of disability advocacy campaigner and former MEP Kathy Sinnott these days.

“I remember Kathy and how she took on the state and she really changed things. Kathy just didn’t give up. Her campaigning changed her life and many people’s lives. I get choked up when I think of Kathy and people like her, you know, the exhausting campaigning work they did.

“For me there’s a day-to-day loss in that you don’t have the same availability for your family when you’re challenging something, but you have to look to the future and think of the greater good.

“We keep going for ourselves and for the many people who are even more powerless than us.

“It is painful and it is very time consuming and exhausting, but that’s how change happens. Also, if we don’t campaign we’re stuck in the foreverness of living like this,” she said.

IN CONVERSATION WITH Allen Meagher

EDITORIAL – ‘Before We Die’ campaigners show need for greater compassion