Strategies for Change

Independent Living Movement Ireland

Disability Policy

SFC Disability Policy Session - James Cawley with Claire Kenny

In this Strategies for Change session, we had James Crawley (Policy Officer with ILMI) talking to us about disability policy. He told us that central to the way ILMI work is to make sure that policy decisions that impact on the lives of disabled people have to be directly influenced by those whose lives are directly affected.

James opened up the session by asking the group – as a disabled person do you feel equal in Ireland today? Feedback included:

  • No, because for example, only certain train stations are accessible, you have to book ahead, you can’t do anything spontaneously, even to call Ticketmaster we need to use a separate phone line, footpaths are not accessible, these small daily things make me feel less than
  • Accessibility makes me feel not equal, doing things on the spur of the moment is difficult, accessing venues and purchasing tickets is difficult, everything has to be planned
  • I don’t feel equal at all, everything must be fought for, education, transport, PAs, to live in the community, even though the government has ratified the UN Convention on the Rights of Disabled People nothing has changed, there’s still no legal right to anything, it feels like we’re always on a wheel
  • I feel like many businesses forget about me, don’t consider me for employment because I am autistic, they don’t want to train me, or they see me as overqualified despite having very little work experience. And the likes of retailers such as Lidl and Aldi make it more difficult having online, timed questionnaires, then lock you out from reapplying for the next six months
  • I don’t feel equal, services are not accessible to me, I have to go the extra mile to access services which are easily available to my non-disabled peers. Policies and regulations don’t go far enough to address the needs of disabled people
  • A lot of venues are still not accessible, where I live only one pub is accessible and even then, the toilet is not accessible for a full powered wheelchair. Banks are not accessible – the ramps are not wide enough. Toilets are inaccessible due to the lay out, baby changing stations are often in the way but also baby changing stations are not accessible for disabled people – too high. Trying to go to a function/event is a nightmare
  • Access to employment is an issue, I should have potentially got jobs but have been turned down after a medical, initial questionaries have questions that exclude us from ever even getting an interview
  • There is a lack of solidarity form non-disabled people in our struggles. Although there are also great comrades, Thomas Pringle TD, and my own political group, are good at listening to me and I am invited to write a section for our local newsletter
  • In terms of transport, buses in Dublin are more accessible than in Galway and elsewhere but getting to the bus independently can be impossible
  • In my head I feel I am equal, even through the practicalities of travelling, of interacting socially, I am a rights holder, I believe I deserve everything that my non-disabled counterparts take for granted
  • I feel that there are two answers to that question, 1) in terms of how systems treat people, of policies, etc, the answer is no. 2) the other side is how equal you feel yourself which is more to do with how you as a person feel rather than the structures and systems. So, no I don’t feel equal, and yes, I do feel equal.

James than shared that ILMI is a national Disabled Persons Organisation (DPO) and that we are led by and for disabled people. ILMI collectively works and lobby’s government for the systems and structures that disable us. ILMI’s strategic priorities at present are around housing, employment, transport, and personal assistant services.

Our values are around equality and empowerment, the language we use is framed in the social model of disability, so on our website, in all of our submissions we talk about disabled people, we don’t use person first language, we use the term disabled people very deliberately. Using the word ‘Disabled’ before ‘people’ signifies identification with a collective cultural identity and capitalising the ‘D’ emphasises the term’s political significance. Using the term disabled people or disabled person is therefore a political description of the shared, disabling experience that people with impairments face in society. It brings together a diverse group of people and helps to identify the causes of our discrimination and oppression, communicate shared experience and knowledge, and create social change. Basically saying that it is the policies, structures, systems, etc, that disable us and that’s why we use ‘disabled person’ versus ‘the person with a disability’. It is the policies, structures, systems that disable us, and stops us from participating in society.

Identity is individual, some people feel strongly to identify as a disabled person, if policies and systems disable us then a PA service, accessible housing, an accessible bus – things may help us to live independently. Some participants feel the word “disabled” is negative, so they prefer to identify as a ‘person with a disability’.

How can we learn from each other and how can we build a more equal and inclusive society?

Breakout Room Feedback Points below:
  • We have to share our experience across our impairments. A wheelchair user has a different experience to a visually impaired person, we need to share our experiences
  • There are multiple committees/voluntary organisations or support groups working along similar lines but there is no connection – if they all worked together, they could be powerful
  • The only real way to make change is collective, individual letters to TDs etc is not so effective, we need to get different people with different interests to make a common approach to the powers that be. A lot of the time your voice isn’t heard, the only way to get a response from government is to protest, get on the national airways…
  • It should not be so hard to life like our non-disabled peers, why isn’t everyone entitled to the same rights e.g. PAS, education, etc? It shouldn’t be this hard…everyone should have the same rights to the same services. Collectively we are not alone, we have power together, this power comes through our shared, lived experiences, through this we can instigate change, we can learn from each other, and we can make change on a large scale
  • We end up in the wrong category because of budgets, we shouldn’t be in some services because of incorrect budget decisions, UNCRPD protocol is not signed off yet, so our government has made ensure that they can’t be brought to court, even at European level
  • Resources/costs are needed to lobby, money spent on updating language around disability, we’re kept off the property ladder, in poverty and out of securing employment.

National Housing Strategy for Disabled 2022 to 2027
“This strategy is to facilitate disabled people to live independently with the appropriate choices and control over where, how and with whom they live with, promoting their inclusion in the community. To further enable equal access for disabled people to housing with integrated support services.” – National Housing Strategy for Disabled People 202022-2027 Executive Summary.pdf

This strategy leads on form the National Housing Strategy 2011 to 2019 (extended to 2021, because of the pandemic). Claire told us that disabled people were not at the table in the old strategy, we were talked about, but we were not included. There was a lot of disparity in the old housing strategy, they were not covering the areas that were important for disabled people, they didn’t give figures, so we weren’t able to judge if it was successful.

This strategy leads on form the National Housing Strategy 2011 to 2019 (extended to 2021, because of the pandemic). Claire told us that disabled people were not at the table in the old strategy, we were talked about, but we were not included. There was a lot of disparity in the old housing strategy, they were not covering the areas that were important for disabled people, they didn’t give figures, so we weren’t able to judge if it was successful.

The Themes of the Housing Strategy for Disabled 2022 to 2027
Theme 1 – Accessible Housing and Communities
Theme 2 – Interagency Collaboration and the Provision of Supports
Theme 3 – Affordability of Housing
Theme 4 – Communication and Access to Information
Theme 5 – Knowledge, Capacity and Expertise
Theme 6 – Strategy Alignment

Housing – Our Housing Rights
Claire told us that she is currently working on a collaborative piece with Inclusion Ireland. See some of the content to this work below:

  • Housing Crisis “catch 22” between housing and supports
  • Application process
  • Long waiting lists
  • Inadequate housing grants
  • Lack of accessible housing
  • Accessible information
What we need:
  • Central, uniform, accessible, application process for housing and supports
  • Review of part M
  • Ring-fence housing
  • Universal design
  • Affordable homes
  • Build inclusive communities

ILMI Working Together for Housing
Making Inclusion a Reality – ILMI worked on a model of best practice, which was rolled out in South Dublin Local Authority region. The project was about disabled people informing the development of the housing policy to the Housing Disability Steering Group (HDSG). The project was also about establishing models of best practice for public bodies on how to engage with disabled people in the design, delivery, implementation, and managing of policies that impact on our lives. It was carried out in conjunction with Values Lab – a report is available and can be sent on.

Some results included the establishment of a network of disabled people across the South Dublin County Council area, which was led by a values led approach, it built the confidence of disabled people to represent the views of all disabled people in their area effectively. Firstly, as a result of the project ILMI has two active reps on South Dublin HDSG, secondly during the development of the National Housing Strategy a number of local authorities were reviewing their membership of the HDSG and welcomed the contribution and expertise of the voices of the lived experience of disabled people. ILMI developed a training programme and series of presentations and inputs which allowed people who are interested in becoming ILMI representatives on HDSG to be informed when nominated onto their local HDSG and attending meetings.

Topics included representation, effective participation, rights, universal design, networking, negotiation, and dealing with conflict. ILMI Housing Network space will take place in September of this year.

There will be one website to connect housing and supports. It has been a bit delayed, but this website is planned.

Group Discussion:
Our understanding of Universal Design see – ( needs to be broadened. Its not just about the house and four walls, it’s not enough to simply be able to enter the house or the rooms. It needs to be about what else is needed in the house to make it so that independent living is possible. It is also about access to environmental controls, technology, etc. In addition, there is a problem where people are offered an accessible house, but they don’t receive the support package to go with it or vice versa. Only when building regulations are changed will we truly have accessible housing. There are many guidance documents but no statutory requirements.

There is a culture in Ireland where we meet minimum legal standards rather than maximum. Consider that it doesn’t matter to a non-disabled person that it doesn’t matter if a house is fitted with steps or a ramp, but it would matter to a person who uses a wheelchair or a movement impaired person.

IWA appears to be doing good work but the power they hold comes from a non-disabled framework, they have a policy of sharing PA’s, they run specialised congregated settings/accommodations – still institutional in a way. To ask someone to share a PA is taking away a persons, dignity and respect and choice of how they choose to use their PA.

ILMI supports the review of Part M. Housing needs to not just be wheelchair accessible but wheelchair liveable. If Part M is extended it benefits more people than just disabled people, it’s about creating an accessible community.

Do you think we as disabled people need to be involved in policy? If so, why do we need disabled activists and DPOs? Why is it important that we are involved in policy?

Breakout Room Feedback Points below:
  • There is a lot of jargon around disability, which can be unhelpful. In terms of universal design – it is important when talking about buildings but also in terms of policies, so they are more inclusive and productive, disabled people need to be at the table in these decision-making forums
  • Disabled people are experts by experience. We need to be able to take ownership of our housing experiences and our own lives, different people have different needs, there needs to be a variety of disabled people represented at these forums
  • We need all policy makers to be inclusive when making policies, we don’t need stand-alone policies, for example we don’t need a transport policy for the country and then a separate one for disabled people. We need these policies to be inclusive and the way to do this is to have disabled people involved in making them to share their lived experiences, which is why we need disabled activists. We need to make sure that all agencies and departments are linked in their thinking and actions
  • Lack of representation at all levels of government structure. Do government ever meet the five percent of disabled people to be able to carry through the voice of the people. Local access officers at local authority, try their best but often don’t have the ability to make change
  • Service providers often send managers or consultants to disability related meetings and not the voice of the lived experience
  • Disability Matters committee, it was a good experience to get our voice heard
  • Politicians count votes rather than people, how do we get seen as a bigger group, a collective group, how do we link with other groups that are looking for the same things, how can we come together and collaborate to be able to make more effective change?
  • Committees, groups, government bodies are meeting and trying to represent disabled people, giving quotes from disabled people but no disabled person actually present to share their experience. if we want to participate in government and councils, we should have the support to enable us to do so.

Under Article 4.3 of the UNCRPD says any decision-making policy about disability or disabled people should be made in full collaboration with disabled people.

Being part of the Housing network etc is a starting point not the end, we should be the people making up the policies because were the people that have the lived experience. We are the experts in our own lives, and we should be treated and valued as such with our voices heard and our rights respected.

It is important that disabled people apply for positions on the boards of the various groups and forums related to supporting disabled people.

We have to own the policies that affect us, we have to participate, we have to be at the table. We should lead by example, are we as inclusive a s we are asking others to be. We are the DPO that is as inclusive as possible, we should be checking ourselves.

We should act in solidarity, to support everyone.

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