Independent Living Movement Ireland

ILMI Amending our Decision-Making Life Course Burpin’ Jigsaw

This February windy spring week ILMI very much appreciated the opportunity to contribute to the Assisted Decision-Making Capacity Amendment Bill (ADMC) discussion with the Joint Committee on Children, Equality, Disability, Integration and Youth (CDEIY) on Tuesday 15th February 2022.

Peter Kearns, ILMI’s Cross Border IT & Social Inclusion Project Coordinator, delivered the ILMI’s Oireachtas TV ‘live’ broadcast opening statement and took questions for Committee TDs and Senators.

Peter Kearns | ILMI

Peter began by pointing-out that the January 2022 rushed submission of its paper responding to the ADMC Amendments, explained in this E-Bulletin article below, reflected to the Dáil Committee “An unfortunate need to begin by stating that given the importance of the Bill, and the scale of the legislation, the timeframe placed on responding by January placed undue burden on Disabled Persons Organisations (DPOs) to organise participative spaces to fully review the legislation”. 

The Committee were told that following ILMI’s creation of on-line collective spaces to enable responses by disabled people, the presentation is communicating the essence of ILMI’s submitted January 2022 observations on the Assisted Decision-Making (Capacity) (Amendment) Bill 2021 (ADMC): Draft General Scheme and Heads of Bill.

Peter used the opportunity to share one personal ADMC Bill related story on the important recognition of ‘will and preference’ out gunning any impairment label narrative or medical model baggage in the Bill’s Amendments and his lived experience over the previous six decades as a disabled person, disabled Activism and Disability Equality worker and lecturing academic. 

When entering disability activism as a teenager Peter pointed out that his late 1980s social model informed will and preference activism has often come into direct conflict with medical model system ideas of ‘in my best interests’ and disability and health sector enforcement of ideas of ‘duty-of-care’. It is interesting that as a national representative cross-impairment Disabled Persons Organisation (DPO), on behalf of ILMI, Peter presented to The Joint Committee on Children, Equality, Disability, Integration and Youth (CDEIY) that we were looking for the age related role of the Amended ADM Bill to proceed to young disabled people over the current Bill’s 18-year of age barrier to enabling young disabled people to access the benefits of its progressive law and legislation. 

As a 15 year old in the late 1970s, with the imposed impairment-label of Cerebral palsy, Peter explained to the CDEIY Dáil  Committee that he had thought that he had eventually managed to escape the special-school system of the 1960s and delight in the working-class cauldron that was Dublin’s Ballymun Comprehensive – I thought I had ‘made-it’, become ‘normal’. But Peter then went-on to mention that his; “working class fantastic parents were summoned by the special-school I thought I had left behind in Sandymount at 12-years old. My parents had to enter a clinical space, with ‘normal’ me in-tow, to meet a Head psychiatrist, a very nice middle-class professional”. From her clinically communicated ‘expertise’ position, Peter described to the Dáil Committee that the well respected psychiatrist used the language of in-his ‘Best-Interest’ to inform the parents that science had found a cosmetic cure for his ‘CP-labelled’ spasms, a new drug named Valium. And Peter was to be prescribed it immediately. 

His parents were uncomfortable with such a move, but later told him that they felt helpless up against the ‘expertise’ professional narrative of the doctor and state backed ‘duty-of-care’ health system. At 15 years old Peter related how he fought against this imposition on my body independence and autonomy. The psychiatrist even suggested that his mother hide the now recognised highly addictive daily Valium pills in his Coolock morning porridge and evening boiled potatoes. 

For weeks, Peter dodged those culinary traps until his parents said “Feck-it, Peter knows something we don’t”. And I did – I had seen other teenagers with the label ‘CP’ becoming quite quickly addicted to Valium and spiralling into depression and lethargic behaviour. Peter explained to the CDEIY Committee that some of those teens ended-up back in their special-schools and day-workshops – Peter said a few took their own lives. 

Without the extra disabling barrier of prescribed drug addiction Peter stated how he went on to ignore further non-disabled ‘expert’ Best-Interest prescriptions and make many young adult mistakes. Including not best interests of sleeping rough on Belgium foggy beaches and just post Franco Spanish railway stations in all his early 80s Inter-rail summers. Peter also lost any sense of ‘Duty-of-Care’ by dropping out of college as the first DCU/NIHE disabled student ‘role-model’ and to live 80s Amsterdam and work-for-nothing in an anarchist community theatre. He returned to recession soaked Dublin as a mature-ish student and enjoyed ‘every moment of my four years at Trinity College doing an English Lit. Degree that would not get me a Best-Interest job-for-life’. The Dáil Committee heard how Peter’s will and preference lived experiences went far beyond the health professional ‘experts’ of Best-Interest to show that they can’t prescribe what will and preference is in the Amended Assisted Decision Making Bill going through the Dáil. Peter said to the Committee ‘you have to feast, sup and burp with the demons & angels of will and preference’.

ILMI’s Peter went onto explain our DPO championing of will and preference to the Dáil Committee, and before ‘we tut-tut that 1970s nice middle-class ‘expert’ psychiatrist and glow in my 21st Century ‘Made-It’ Amn’t-I-an-Inspiration for dodging my legally prescribed bad drug experience’ – Peter stated that we should remember that currently once a psychiatrist determines someone lacks capacity to consent to such impairment label ‘treatments’ against someone’s will, these ‘treatments’ are deemed lawful under the Mental Health Bill 2001. As a Disabled Persons Organisation, ILMI recognises there is an absence in legislation and the socially constructed Health system on the need to recognise the right of disabled people to refuse the administration of “treatments” against people’s expressed wishes which contravene Articles 14 and 15 of the UN CPRD. 

In many instances, family are supportive of the right of disabled people to full, independent and autonomous lives. However, there are many instances where the will and choice of disabled people will be contrary, throughout their Lifecourse, to the views of family or guardians, and this needs to be named in keeping with the UNCRPD spirit of will and preference.

ILMI is all about using its collective mandated 100% disabled Activisms voice to support a need to make direct reference to the UNCRPD in the Guiding Principles of the Bill.  As with many of our colleagues who also made submissions on 15th February Oireachtas Committee TV, ILMI appreciates that direct reference to the UNCRPD has the potential to strengthen Health policy and impairment label prescribed drug usage. Peter told the Committee of his time as Forum PwD Policy Development Officer at beginning of the Noughties, he worked with the DPOs and NGOs in New York at the United Nations building writing-up the effective participation Articles of the Convention. ILMI feels that a direct referencing of UNCRPD is compatible with the human rights obligations in the Convention. Peter also shared how ILMI feels it would also signal Ireland’s commitment to disability equality and human rights led interpretation.

ILMI and the Realisation of an Effective ADMC Health Directive DPO dialogue should be based on disability equality proofed Health policy as central to the way the state works in ensuring that policy decisions that impact from the Bill on the lives of disabled people must be informed by disabled people through representative DPOs. ILMI further recommends that DPOs are consulted by Health policy makers to develop the ADMC Bill codes of practice and guidance on interpretation and application of health relevant policies through consultation with and the meaningful participation of all those who are likely to be impacted by the rushed ADMC Bill, that’s to be completed by early summer.

The Dáil Committee heard that ILMI’s philosophy can be summed up as: ‘Nothing about us without us!’ and ‘Rights Not Charity’ – and when we deem necessary, to look beyond non-disabled professional ‘best-interest’ and ‘duty-of-care’. Peter concluded by stating that real and effective will and preference, like life itself, can be messy and fraught with mistakes and learning forks in the road. Will and preference led independent living choices are relevant to all our lifestages throughout our citizenship LifeCourse. Effective independent living is not just about living in a house or accessing the Dublin to Sligo 5.17pm train without phoning 24-hours ahead. 

The Dáil Committee were told that ILMI views effective independent living with UN CRPD informed will and preference is about all the pieces of the Independent Living jigsaw fitting together directed by the lived experiences of disabled people. A jigsaw of many inter-connecting pieces of disabled people LifeCourse choices, our control, our dignity and autonomy. A complete colourful jigsaw ADMC Bill roll-out must have a space for will and preference, alongside the adequate supports to have autonomy led life affirming ‘messy-pieces’ of our choosing. 

ILMI would like to take this opportunity to thank all members of the Joint Committee on Children, Equality, Disability, Integration and Youth for listening to our Submission and look forward to their future DPO led questions or comments.

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