Making Advocacy Real Event takes place in Galway

April 9 2024, 11:03am

Making Advocacy Real Group Event

DFI was delighted to host a self-advocacy learning event today is Galway on 'Making Advocacy Real'. The event, which took place in the Clayton Hotel in Galway, was attended by DFI members from the region. The event was the third in a series of in-person events which are part of developing a DFI self-advocacy toolkit for members. 

Members represented at today's event included Arthritis Ireland, Acquired Brain Injury Ireland, Cheshire Ireland, Irish Wheelchair Association, Family Carers, Galway Centre for Independent Livinng, Prader Willi Syndrome Assocation Ireland,  Spina Bifida Hydrocephalus Ireland, Rehab Group, and Western Care. 

Today's event was was MC'd by disability advocate Marian Maloney from Galway, who attended with her guide dog Leon. Introducing the event, Marian shared some of her own self-advocacy journey which she said she started in 1999. She said she is still on that journey and is still learning about all of the different disabilities that are out there. 

Marian said, "It is important for us to come together and have one strong voice. But we all do need our own niche space, like me with the vision impaired and blind community. I feel we are often forgotten about and tat people don't understand blindness and vision impairment. Everything is not black for me. People don't understand that. 

"I was born with my vision impairment but was not 'diagnosed' as having a form of vision impairment until I was 12. It was only in 2022 that I was formally diagnosed with Stargardt disease."

Marian continued by saying self-advocacy is so important and that listening has to be part of it. She said while sh herself has never had a problem in speaking out there are people who need more time and space. 

She said the most important message for organisations to take away today is the need to listen always to the lived experience of disabled people. She said, "Let's stand together as one voice but let's also be open to peer support which can be such an enabler for disabled people." 

Marian concluded by thanking DFI for "Coming West to Galway!"

Disability activist Julie Helen is working with DFI on the Self-Advocacy Toolkit gave an update on its development so far. Julie said the toolkit is very much a work in progress and that the rich material from the previous events in Cork and Dublin have borne much fruit. She said today's contributions will further contribute to the final tooklit. The DFI toolkit is co-created and will be a living and breathing document and not something that sits on a shelf. It will be of practical use for self-advocacy meetings. It will be supplemented by resources. There will be questionnaires to help orgs figure out how self-advocacy needs to work in organisations from small to large. 

The break out discussions were facilitaed by DFI staff members Dr Emer Begley, Susan O'Brien, Lisa Fenwick, PJ Cleere and Áine O'Sullivan and by members of the self-advocacy advisory group. 

Today's event was the final of three in-person events. There will be one final event on the Tooklit with self-advocates. 

  • What is self-advocacy? 

Self-advocacy is essentially the action of communicating and representing one’s needs, views or interests. It is about understanding your rights, speaking up, taking action and taking control of one’s life. Where people cannot speak up for themselves they are supported to do so by others. Effective self-advocacy will mean that a person has good information, training, the right support when needed, opportunities to learn by doing, confidence in themselves and will understand that self-advocacy can be at an individual or group level.

  • Stargardt disease is a rare genetic eye disease that happens when fatty material builds up on the macula, the small part of the retina needed for sharp, central vision. Vision loss starts in childhood but some people with the disease do not start to lose their eyesight until they are adults.