Activism is like a “Muscle”; the more you use it and stretch it the “Stronger” it becomes – SFC Des Kenny 2021

In our Strategies for Change Activism in Action session, we had four people come and talk to us about their activism journeys. The panel included Eileen Daly, Colm Whooley, Des Kenny and Selina Bonnie. 

Each activist was asked:

  1. Too introduce themselves and share some of their activism experience’s
  2. What were the key things to know about / tips you would give to disabled activists?
  3. What are the challenges that disabled activists face, and what are the supports activists need to do to influence change.

Colm had a motorcycle accident in 1980 and ended up with a spinal cord injury. Following this, he went to the National Rehabilitation Hospital for several months, adjusting to his new life. However, Colm didn’t get involved in disability activism for several years after his accident. He told us that he was reluctant, “I didn’t want to be involved with the disabled community; it was my way of coming to terms with my injury”. But ten years on, after experiencing all of the barriers he had to hurdle, “I decided to set up Spinal Injury’s Ireland in 1993” – see https://www.podbean.com/ew/pb-vnqjb-f2a9e5 for a podcast for more about why Colm set up Spinal Injury’s Ireland and more. 

Colm said that this was probably a perfect time (1990’s) to get involved in disability activism “because there was all the activity around fighting for the right to have Personal Assistance”.  He can remember sleeping outside government buildings with Martin Naughton, John Doyle, and many others, “but sadly most of these people have passed away”. Nevertheless, Colm felt very fortunate because he met some wonderful people. They helped him understand how the system worked and what the Disability Movement was trying to achieve “I knew nothing about disability rights”– see https://www.irishtimes.com/news/social-affairs/disability-protesters-say-budget-plans-a-kick-in-the-teeth-1.2353883 for an article about the fight for more money for Personal Assistance. Colm has also worked abroad in Nepal and in other European countries to set up Spinal Injuries Organisations as he did in Ireland.

Selina shared that she was a person with an impairment for all of her life but only really came out as a disabled person in her early twenties. Previous to this, she didn’t want to be associated with disabled people “back then I felt that being disabled was a negative thing”. 

Selina started her working career on a Community Employment Scheme through necessity, “I needed to earn money”. Her work was to promote disabled artists and encourage them to be the best they could be. 

Around the same time, she started to read books by Disabled Activists like Tom Shakespeare and Colin Barnes (this person was Selina’s Professor at Leeds University, where she completed her MA in Disability Studies). Reading these books, she slowly discovered that it was ok to be a disabled person; this awareness was empowering.  And also, at the same time, she met Martin, and for Selina, he was such a “special person”. 

Some of her colleagues on the Community Employment Scheme were members of the gay community. They needed her support to proofread a lot of their press releases as some had dyslexia. For Selina working with these people sparked her interest in the sexual rights of disabled people (see – https://www.oireachtas.ie/en/debates/debate/joint_committee_on_disability_matters/2021-03-09/2/). 

She joined the Centre for Independent Living (ILMI as it’s known today), and on many occasions, she found herself on the streets at night with a sleeping bag in one arm and a placard in the other fighting for something or other. Coming out as a disabled person was forced upon her in a way; being connected with CIL and interacting with disabled people helped her. “I started to feel that together we were collectively affecting change” – see https://www.youtube.com/watch?v=uYI4ckRFDF0

“I realised how good it felt; it was a process of finding my power within, feeling confident, being around all my wonderful peers” I didn’t care what the rest of the world saw me as I knew I was a strong independent person who had thoughts and rights like everyone else”. 

Selina urged all of us to read The Sexual Politics of Disability by Tom Shakespeare, Kath Gillespie-Sells and Dominic Davies. This book talks about “coming out”. You can read this book via the Leed’s Disability Studies Archive (see https://disability-studies.leeds.ac.uk/library/author/shakespeare.tom/ and an article written by Tom Shakespeare – 20 years on from writing the Sexual Politics of Disability – see https://researchonline.lshtm.ac.uk/id/eprint/4650613/1/sjdr-25_Sexual%20Politics%20of%20Disability%20twenty%20years%20on.pdf

In 2002 Selina decided to “jump the fence” and went from being a lobbyist to being a public servant, making changes within”. She remembers Martin saying to her, “nobody ever really leaves the movement”, and he was right. So I’m here with you tonight, still going strong, as an activist by night and as a public servant by day. I am a disabled person and proud of who I am”.

Eileen’s journey into disability activism started as a 5th-year student, “I was very young and very naïve, but I had this dream of wanting to go to

university”. And for Eileen, it was how she was going to make this happen? She felt that nobody with her level of impairment could ever go to college as she needed assistance with all aspects of daily living. And then, one evening, she watched “In from The Margins”, a series of Programmes that explored the lived experience of disability presented by Donal Toolan on RTE. This particular evening Donal was speaking about the Independent Living Movement and how it was coming to Ireland. Everything changed after that, Eileen was well aware that there were no supports, and no structures in place to support disabled people to go to any kind of 3rd level, “but it was my dream”. Many of her family thought she was crazy, but her mother helped her fill out the forms. 

Eileen remembers a Rehabilitation Officer from the National Rehabilitation Board coming to visit her; this person told her “that she would do nothing more than working Jacobs Biscuits Factory”. He was told where to go, “in very colourful language, and the rest is history”.

Eileen completed her leaving cert and was probably one of the first people in Ireland to receive” reasonable accommodations” to set her exams, “I just had to talk; it was very liberating”. She ended up going to UCD and completed a Masters in TCD. Also, Eileen secured a personal assistance service at this time and still has it to this day. She could not have done this without the support from her peers. 
Eileen came out as a disabled person very young “without even realising it“. At eleven, she remembers being bullied in her local mainstream school and consequently left to go to a school run by Enable Ireland. There she was surrounded by other disabled kids, and she just got “used to it” – see https://www.youtube.com/watch?v=CuRpZH-7NxM for a talk given by Eileen in 2014 about the genuine inclusion needed in our educational system.

Eileen came out as an activist when she went to 3rd level; as she got very involved in student politics and subsequently got involved in Independent Living Mo – see https://www.independent.ie/life/health-wellbeing/health-features/seven-days-in-the-life-of-a-wheelchair-user-36548211.html – Seven days in the life of a wheelchair user. Eileen currently works in supporting disabled people in their educational and employment journeys.

Des had a childhood accident and eventually lost his sight, and at age nine, he went to a special school in Dublin for the blind. Unfortunately, Des “couldn’t sit the ordinary leaving cert (the 1960s) because the exam papers were not in alternative formats and the curriculum being taught wasn’t accessible”. But luck was on his side, “we were studying literature probably at a higher level and elements of philosophy as well”.

Des told us that he “evolved gradually” into becoming a blind person. And as such, “I didn’t need to come to terms with being blind until I left school”. Des explained to us that when you have been in an institution with other disabled people, “you can rise to the top of the mountain, but when you go out into the big world, you become much smaller in the relationship with others that perceive you cannot succeed”. Des sees luck as an essential part of his journey in life, but he pointed out that “you need to learn to recognise it and grab it when it’s on offer”. 

When Des left school, he had two choices, become a telephonist or go and work in a special workshop for the blind, “it was Hobson’s Choice“. Des published an article in the Irish Times when he was 18, and somebody seen it and subsequently secured him a full-time job transcribing books. Des spent six years doing this and then joined the National League of the Blind as their General Secretary. It was the first DPO of its type (started in England) – a trade union for blind workers. 

Des was responsible for the employment conditions of people working in the sheltered workshops for the blind and the blind telephonists working in the public service. “It was a great job because you were instantly into activism in the sense that you were protecting rights”. Becoming aware of people’s rights and being associated with other trade unionists was very empowering for Des. They “adopted me and minded me…, it also taught me the nuances of being an informed trade unionist”. 

Des moved on to working in DFI in 1980, then called the Union of Voluntary Organisations for the Handicapped. One of the things that Des did at the start was to change its name. Des also got invited onto the board of the NRB and worked towards its demise. These experiences allowed him to have a say in policy and its development throughout his activism years. He was involved in the creation of the Free Travel Pass – see https://www.gov.ie/en/service/9bba61-free-travel-scheme/, the concessions that we have now for disabled motorists – see https://www.revenue.ie/en/importing-vehicles-duty-free-allowances/guide-to-vrt/reliefs-and-exemptions/scheme-for-persons-with-disabilities.aspx and air passenger rights for European disabled people – see https://www.airpassengerrights.eu/en/reduced-mobility.html for more information about your rights as a disabled person when flying to any country within the EU.

Des went on to be Chief Executive of the National Council for the Blind until his retirement in 2007. He would like to think that he had some influence in changing the mindsets (blind persons were very competent than blind persons needing care) of those connected with the Council during his time here. See an informative article co-written by Des about the cost of blindness in Ireland –https://www.hindawi.com/journals/joph/2016/4691276/
Engaging in change for Des kicked off in the Trade Union Movement as before mentioned. He then went on to be awarded a Diploma in Social Studies, and during this time, he joined a debating team “discussing the social issues of the time”. Des also met other activists in terms of people “who were starting to think differently”, and a lot of these people had the same kind of experiences, “we listened to one another”. Des eventually found himself completing a Masters in Healthcare Management and Economics, which led him into reading books by Jenny Morris – (see https://disability-studies.leeds.ac.uk/wp-content/uploads/sites/40/library/Independent%20lives.pdf to read Independent Lives, Community Care and Disabled People) and Mike Oliver, to name but a few.

Key Things to Know About / Tips from Experienced Activists

  • Be aware of how activism has changed systems – Personal Assistance Service, accessible transportation, air travel passenger rights, braille on product packaging, reasonable accommodations in education, employment rights, equality legislation, free travel, grants for disabled drivers  
  • Become involved – social movements need new blood 
  • Look to your peers, learn from them, use them for advice 
  • Read books & articles from disabled writers 
  • Believe in your right to use your voice, believe that your lived experience is valid and that you are the best expert of your own body 
  • You have a right to say no and make mistakes; however, it is essential to learn from them
  • Believe that you can be a “Change Maker” – grasp every opportunity you get – be Influencers
  • Use what you hear politicians say – repeat it at every opportunity you get – I heard you say…
  • Learn the language that policymakers and others use – if you start to use their language when you are conversing with them, they will engage
  • If you want to do something, understand what it is. Never let anyone tell you that you don’t have a right to at least try it out. 
  • Recognise the importance of your own intersectionality; you are more than your impairment label, embrace all of who you are and that you can become
  • Inform to educate and work in partnership with like-minded non-disabled people
  • Find your way to the right tables in the right arena’s where things are happening and where policies are being made. Be able to sit around those tables where the decisions are made, have confidence in that you are an expert by experience – “having the arrogance to know that you have a right to be there but having the modesty not to show off that you have a right to be there”.
  • Know that you are the influencers, know that you cannot do it by yourself. We need to ensure that “our influence with others builds camaraderie”. So, if we want to effect change, “we need to talk to the architects and be part of its architecture” lobby for something that makes sense to them because they are going to interpret it into the nuts and bolts – being part of the transformation
  • Learn from the movement’s mistakes.

The Freedom Drive – Selina’s Memories 

The Centre for Independent Living (CIL) Instigated disabled people coming together, see https://www.youtube.com/watch?v=h9efDYTa4JU and https://www.youtube.com/watch?v=59svhLFbN6A, and https://www.youtube.com/watch?v=7zFGxykPd1s for more information about the Freedom Drive and its purpose. 

“We were with the Changemakers in the European Parliament”, see https://www.youtube.com/watch?v=7VdaWd29-C4. We made “presentations to the European Court of Human Rights”, and “we were partying and barbequing and hanging out with our peers from all across Europe and learning from one another – what was different about their lives and what was the same”. This experience helped us see where our collective action could influence “it is so so important”.
Sometimes “we get too focused on Irish policy and what we are implementing here”. Most of our disability policy has come from European, international level filtering down, eventually reaching local authorities and other agencies.

Key Challenges

1. Dealing with our “hierarchy of impairment” and the segregation of Impairment institutions fighting for their piece of the pie  – ILMI is a cross-impaired DPO – figuring out how to work together as a collective to influence real change.

2. Dealing with the challenges of Covid, it is not going to go away, “we as disabled need to make sure that our voices are heard”. Working from home has opened up employment and educational opportunities for disabled people, “but we should not assume that all disabled people want this”. We still need to lobby for accessible transport, the right to Personal Assistance and so on. We cannot let Covid take over and our policymakers overlooking our rights to live good lives.

Covid has made our streets and paths more inaccessible; we still need a lot of change to happen, this cannot be left unsaid.

3. The success of inclusive education has meant that many disabled people do not have the same opportunities to meet up as a group as disabled people in the past had.

4. Our Equally Legislation as it stands is not fit for purpose. It is not safeguarding disabled people’s rights. As a collective, we need to challenge this.

Key Supports

1. Having enough money benchmarked for activism to influence change. Disabled people are not all the same “access is much more than ramps”.

2. Seeing people as whole people – we are much more than our impairment label – we need universal access and genuine inclusiveness.

3. ILMI wants to engage with and support those with lived experience via varying platforms, harnessing talent and meeting the needs of individual disabled people to create a new movement led by disabled people.

4. ILMI want to have many rooms in their house. Listening to and taking on board disabled peoples lived experiences of discrimination, be it persons with physical, intellectual, sensory, or mental health impairments – the common thread is about empowering the collective to become “collective change-makers”.

Our challenges can be our opportunities

1. Disabled people need to COME TOGETHER with ONE single message

2. Get the general public on side (educate them about our collective lived experiences of systematic exclusion) – “then real change can happen”.