Dear Minister Flanagan,
I’m writing to protest the imminent closure of the National Platform of Self-Advocates and to ask you to intervene to prevent the blow to disability rights in Ireland that this loss represents. Ireland was one of the last state parties to ratify the UN Convention on the Rights of Persons with Disabilities (CRPD); now it seems that we are violating its terms before it has even been implemented.
The CRPD has promised equality for disabled people like nothing before. One of the reasons for this is the leading role disabled people took in the treaty negotiations. This leadership should be embedded in every aspect of the CRPD, especially monitoring of implementation.
There are specific articles of the CRPD that deal with this role, including Arts 4.3, 29 & 33. It is clear that states are expected to actively encourage the participation of disabled people – and specifically DPOs – in all aspects of CRPD implementation.
Since 2011, the National Platform of Self-Advocates has taken part in public consultations, led research, trained practitioners around the Assisted Decision-Making Act, campaigned for housing, homelessness supports, & employment for people with intellectual disabilities, and much more.
We have very few DPOs in Ireland. The National Platform was the first, set up in 2011, and remains the only one representing people with ID. You don’t need to look far into recent scandals (Aras Attracta, forced treatments, abuse) to see why people with intellectual disabilities need their own DPO.
To be clear, a DPO is a disabled persons organisation. It is run by and has a membership of a majority of disabled people. It is not a service provider nor a parents’ group. It is disabled people performing collective advocacy.
The National Platform has always made as much as they can out of small victories. They have encountered amazing allies, excellent supports. Along the way they have also been treated with paternalism, tokenism, have been talked over, excluded and dismissed. Yet they persist.
Their work is innovative. They have created their own norms, their own organisational culture, one that respects all their members and the skills and life experiences each one brings to the group. Their ways work. They educate everyone they work with and their practices should be adopted by all who want to work with them.
Unfortunately, not everyone understands the importance of centring people with intellectual disabilities in participative decision-making processes. Some infantilise and dismiss their experiences and expertise. Some see adoption of inclusive practices as too much work. Others don’t understand why people with intellectual disabilities don’t just get experts to represent them. They know that allowing others to speak for them has never worked and will never work.
I have witnessed all this over the past five years. The Platform has allowed me to follow them as part of my doctoral research, to observe their work, their methods, their relationships. I have learned so much from their generosity and unlearned so many assumptions I held about intellectual disability.
The National Platform has been advised by many to become part of a more established organisation. When the entire history of people with intellectual disabilities has consisted of being hidden, disabled and silenced by others, this is not a move easily accepted. The National Platform has struggled (and succeeded) for years to establish and maintain their organisational autonomy and their independence. To give this up would neuter them. Yet that is the only solution being offered to their current crisis.
Finian McGrath has tried to keep the National Platform afloat this past year and a half with small interim payments. DPOs cannot survive on goodwill. They require stable, predictable funding schemes that are accessible and which place the needs of disabled people at their core. No public schemes currently do this.
Instead, the National Platform is now preparing to withdraw their voice from chambers where their words seem to go unheard. They have been asking for state assistance with this since 2018. Nothing has been offered which accommodates their needs. This is not equality.
I hope you can understand why this band of volunteers is so important to disability rights. They gave hope that DPOs could form, could succeed, could insist on an equal place in decision-making. Now I’m not so sure at all. When we lose the National Platform, we lose an organisation specifically set up to allow Ireland to fulfil our CRPD obligations. If nothing is done to save the Platform, it feels very much like a deliberate act of vandalism against equality and accountability.
I urge you Minister Flanagan to address the looming closure of this DPO and to ensure Ireland fulfils our obligations to actively promote an environment where DPOs can flourish and people with disabilities can participate in all aspects of political and public life.
Thank you for your time.
Emma Q Burns
Centre for disability Law and Policy