Thursday, September 21, 2017
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Sarah Lennon
Guest Editor - Sarah Lennon, Inclusion Ireland

Human rights are universal and that means they apply to us all. Yet the language surrounding human rights and their instruments can mean that human rights are not universally understood. Many people don’t feel connected to them or that they offer solutions or opportunities for inclusion.  Terms such as UNCRPD, optional protocol, progressive realisation, periodic review and enforcement mechanism don’t feel very user-friendly.

But rights are real, and often we often don’t realise that until we are restricted in them. Ireland has signed up to many international rights instruments, and when we do so we are saying that we agree with them and want our society to reflect them. One of those agreements is the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD). In allowing over a decade to pass between signing the UNCRPD without ratifying it, which would bring the Convention into force, Ireland has sent a clear message to the International community – disabled people don’t matter and disabled people accessing their rights is not a priority for us.

The challenge that I set myself when I was invited to edit this edition of Frontline, was bridging the gap between the legalistic and academic language of human rights and the reality of the lived experience.  I wanted to show that disabled people accessing their rights does matter.

The UNCRPD, when ratified, will help, even though it does not create any new or special rights. Disabled people don’t want special rights, they want the same rights as everybody else. This edition of Frontline articulates that, and features a number of articles from self-advocates clearly talking about what matters to them and what support they identified for themselves to achieve their goals. They talk about inclusion, being in the world with everyone else and enjoying the same things as everyone else. The self-advocate stories talk about lofty ambitions, such as buying your own home or representing Ireland on the international stage or on celluloid, but also everyday things like going to college, having your own possessions or simply having a choice.

If Ireland was to ratify the UNCRPD, we would begin to be monitored on the international stage. Our performance on the rights of disabled people would be scrutinised. In preparation for this, we could look to Malta for an idea as to how disabled people could participate in this monitoring work. It is critical that the lived experience of disabled people is at the forefront of all political or legal analysis and the Maltese experience offers us a roadmap.

It should not be assumed that Ireland would perform well under any such monitoring. Our close neighbours in the UK were examined by the UNCRPD Committee in August 2017 and were said to have “totally neglected” disabled people and that cuts there had caused a “human catastrophe”. Ireland, as we know, has come through a period of economic turmoil and many of the experiences here mirror our neighbours to the North and East.

Why is Ireland delaying ratification? Perhaps Ireland is afraid that such a critical glare would be cast upon us and like the UK, we would not fare well? We can only speculate as to how we would perform if such a monitoring eye were cast upon us. When he was quizzed on our bewildering failure to ratify in December 2016, Minister for Disability Issues Finian McGrath said that while Ireland was “one of the few EU-member States yet to ratify the Convention . . . in terms of quality of service and actual position of persons with disabilities in society, Ireland is in many respects in advance of other EU States”.

When we look at some of the contributions in this edition, we get a picture of how living in Ireland is for disabled people. Stories detailing the continued existence of the Victorian-era 1871 Lunacy Act, the effect of which is so restrictive and undignified. We look at the continued denial of people with disabilities of their rights to form a family or have children, or indeed to enjoy their reproductive rights as they choose. We see the barriers that people with disabilities experience to accessing justice, supports. We witness the difficulty we have in keeping people with disabilities safe from abuse or neglect, and when we consider the 2,500 people who are still within the walls of institutions then any claim that we are in advance of other EU States needs robust challenging.

There are reasons to be cheerful, but they are not in the form of green-shoots from the State or government, but from people with disabilities themselves. Self-advocacy is and will always be the most effective form of advocacy. When we see people with disabilities demanding their rights, to make their own decisions, to live in the community instead of an institution, to travel, to perform, to play sport, to work, to study, to enjoy their rights equally with others, then it becomes clear.  It will not be through an act of perceived charity or benevolence that disabled people take their rightful place as equal citizens, but through pressure. That pressure must be led by disabled people, but we can all help by joining in the demand for equality. Ireland will eventually ratify the UNCRPD, perhaps through embarrassment alone. When we do, we will see whether we are truly in advance of other States in respect to the rights of disabled people or whether, as is certain, there is significant work still to be done.

In either case, it is crucial that disabled people themselves are the ones to adjudicate, and then the real work can begin.

How a stage play with a cast of actors with intellectual disabilities made it to the silver screen.

Len Collin directing Kieran Coppinger
  • Sanctuary was a successful stage play with actors with disabilities
  • The story was about people with disabilities and relationships
  • There was a plan to make it into a film
  • Filming the story had lots of challenges and needed a lot of planning
  • Actors with disabilities don’t get the same opportunities as other actors
  • The play and film played a large part in changing an old-fashioned law.

I have great admiration for actors. I started my career as a thespian and know how tough and demanding it is to learn lines, remember blocking and handle props, without lapsing in concentration, losing your accent or dropping your character. Actors have to face a lot of rejection and disappointment; they have to handle adversity with a smile, and often they have to hold down jobs outside of the profession whilst they are resting. In my own time as a professional actor I cleaned toilets, worked in a dye factory, delivered Tupperware, laboured on building sites, I even stuffed envelopes for a charity organisation. Those cold calls you have from people selling insurance, double glazing or doing surveys, are probably actors between jobs. If you’ve ever been unfortunate enough to be unemployed for any length of time, you have most probably stood next to a would-be actor in the queue. It’s a profession with far more downs than ups, and most actors know that the glam and glitz of Hollywood is a dream beyond their reach.

So why do they persist? Why do they put themselves through torture just for the chance of being somebody else up on the stage for two hours a night? Or for the fleeting few seconds they may be allotted on a film set? It’s because they love what they do. It’s because in that moment when the audience laughs, applauds, or cries… they are acknowledging you, your talent and even your very existence. Little wonder then that marginalised individuals, such as persons with intellectual disabilities, might find a sense of worth and achievement through the performing arts.

I first encountered the actors from Blue Teapot Theatre Company in 2011, when they auditioned me for a screenwriting commission as part of an Arts and Disability Ireland scheme. Perhaps using the word “audition” is a little strong, but that’s what it felt like. I was impressed by the confidence of the actors; this was not acting as therapy, this was not something to do in their spare time, this was an ensemble cast of professional actors who happened to have intellectual disabilities. This attitude is integral to artistic director Petal Pilley’s vision. “They’re professionals. Pure and simple.”  Initially I was only hired to write the short film script for the cast, but Petal asked if I would like to direct the performed reading of the script planned for Culture night at Druid Theatre. This was how I really got to know the actors well and what they were capable of. When Culture night came around we had a full house. Kieran was very chilled, Charlene very chatty, Frank nervous with Paul calming him down, it felt like any green room backstage I had ever been in. The only difference was the choice of pre-performance meal – Pizza. The performed reading was a huge success, I worked with the actors on stage, helping orchestrate the performances a little like a conductor. It was an amazing experience that I will never forget.

A year later I saw the cast perform in Sanctuary, at Blue Teapot’s studio theatre in Munster Avenue. Even though I knew the cast well, I was blown away by their performances, and charmed by the wit and intelligence of Christian O’Reilly’s script. However mostly I was appalled and angry about Section 5 of the Criminal Law Act (1993).  I was not familiar with this law, which effectively makes it illegal for two people with intellectual disabilities to have sex unless they are married.

In the pub afterwards I proposed that Sanctuary should be a film, that this world had not been portrayed on the silver screen before, and that people needed to be made aware of the absurdity of the unjust law at the heart of it. I was impressed by the story, but also struck by the fact that the actors were very openly prompted on stage. The reason for the prompts was mostly to do with the gales of laughter that would interrupt the actor’s flow. On stage, an actor like Patrick Becker could turn this prompting into part of the performance – it became a contract between the audience and the actors, and added to the charm and involvement. Of course, on film we stop and start all the time and I had been working with the actors on camera technique, so it wasn’t a massive leap to make. Getting the film financed and made however would be another battle.

The issue, if you are an actor who happens to have Down’s syndrome or autism, is that there is very little space for you on screen. A role which may suit an actor with an intellectual disability, such as the character of Josey in Garage (Abrahamson 2007) or Raymond Babbitt in Rain Man (Levinson 1988), is usually taken by an actor who does not have a disability. This is known as “Cripping Up” and is often compared to actors “Blacking Up” in the past. It’s a phenomenon that anyone working in disability arts is well aware of, and thankfully is less prevalent in theatre due to the sterling work of companies like Blue Teapot in Ireland and Mind The Gap in the UK (to name but two). The situation in film and TV however, is that the sighting of any actors with disabilities is as rare as hen’s teeth. We needed a producer who was as passionate and tenacious as we were, we found her in Edwina Forkin of Zanzibar films. Thankfully, the Irish Film Board/Bord Scannán na hÉireann, the BAI (Broadcasting Authority Ireland) and RTE backed our proposal, and in 2015 the cameras started rolling.

Up to this point everything was in theory only. The actors at Blue Teapot have a routine, a person with Down’s syndrome or autism is reliant upon routine… and the routine in place was a three-day week with five hours per working day interspersed with regular breaks. During performances, this five-hour working day would be shifted to accommodate evening performances. However, filming days are long, at least eleven-hour days on set with travelling, hair, make-up and wardrobe not included. So in reality fourteen-hour days, six days a week. Would the actors be able to manage such long hours? Would the nerves of working in front of a film crew of twenty plus people get to them? The lights? The sets? The long waits in between set-ups as lights and camera are moved? There were many imponderables.

The first scene we shot was Kieran’s character Larry changing from his work clothes into his going out clothes. We were on Location in Supermac’s on Cross Street. Kieran was clearly nervous, even though he said he was fine, I could tell that he was just a little edgy. The crew were all new to me and Kieran, there was tension on set for sure… and that was about to get worse. As the cameras started to roll the action was simple enough. Kieran had to unbutton his shirt. Kieran has big hands, with chunky fingers, this is often a characteristic of Down’s syndrome, and he was having trouble with the buttons, he was taking an age to get one button undone. The tension was building on set, how long was this shoot going to take? Here we were on Roll 1 Slate 1 Shot 1 Take 1 with hundreds of takes to come over the thirty day shoot, and time was passing very slowly. My instinct was to keep going; I had faith in Kieran, and I knew that the crew also needed to know what they were dealing with – then the button popped out of the hole of the shirt, one undone… a slight relaxation in the crew… but then Kieran’s fingers moved to the second button and tension doubled. Kieran then showed why he is a professional actor and justified my absolute faith in him, he improvised, he realised that the buttons were taking too long, he sensed the tension and he came up with the solution, he pulled the shirt over his head – He solved the problem and the crew fell in love with him from that very moment.

Over the course of the thirty days filming there were many moments that challenged us, and the actors were always equal to it. Yes, the days were long, but we scheduled the actors so that each individual worked no more than five days in any one week. We tried to engineer the days so that the hours were more manageable… but still the actors coped with those odd days that were fourteen hours long. They rose to every challenge they were given. Acting on film is much more technical than theatre acting as movements have to be precise and remembered. What hand did you have your cap in? Where exactly did you put down that phone? Notes can come from Director, Continuity, DoP, Camera Op, Sound, Props, Hair, Make-up, Wardrobe… There is a lot of information to digest between takes. At the start I would have all of this information filtered through me, but soon it was obvious that the actors were more than capable of absorbing all the instructions themselves. Occasionally something would be forgotten, or a line would cause issues… if you watch the film carefully you can spot a few of these moments… look out for “Sexy traffickers” or “The missing phone” – but overall the actors exceeded expectations.  The UK Department of Health partly describe Intellectual Disability / Learning Disability as – “A significantly reduced ability to understand new or complex information, to learn new skills” In my opinion the making of Sanctuary has blown this definition out of the water. It is of course far more about reduced access, and less opportunities. It is the industry that needs to change, not the actors. We need more films like Sanctuary and greater representation on screen. We need to see an end to actors “Cripping Up” in the hope of garnering awards. Sanctuary has authentic performances from talented actors who deserve a platform.

Oh and what about Section 5 of the Criminal Law Act (1993)? Well thanks to the sterling work of Inclusion Ireland, and other activists… and the fact that Sanctuary highlighted the issue… that law is no more. There is still a fight ahead of us to change people’s attitudes – it takes time to challenge ignorance, but we are getting there.

Author Bio

Len Collin directed ‘Sanctuary’, his first feature film, for which he has won Best Director at Newport Beach Film Festival and Best First Feature at the Galway Film Fleadh.

In 2010 Len wrote, produced and directed the award winning online drama ‘Covies’, which won an Allianz Business to Arts Award for creativity. His short film ‘Bound’ (2014) has been seen around the world in Ireland, America, Germany and the UK. 

Len is best known as a screenwriter, and has written for a plethora of television series over the years. He has been responsible for over fifty episodes of the ‘The Bill’ was lead writer on ‘Ultimate Force’, ‘London’s Burning’ and ‘Holby City’. Len has written a number of episodes for ‘Soldier, Soldier’, ‘Casualty’ ‘Thief Takers’,’Eastenders’. ‘The Clinic’ and ‘The Chief’.

Len’s theatre plays include ‘Box’, ‘Terrible Beauty’ and ‘Soprano’s Last Supper’ [adaption of the Vegas show for Tivoli Theatre Dublin]

Len has also starred in many TV shows and films including ‘A Touch of Frost’, ‘Dot the I’, ‘An Exchange of Fire’ ‘Call Red’ and ‘High Heels and Low Lives’.

Len is also an educator and currently lectures in Screenwriting and Film Production at Northumbria University. He is in the middle of a PhD entitled The Representation of Intellectual Disability in Film and Television.

For Diarmuid O’Leary, performing is a key to feeling independent. He tells us all about a visit to tinsel town…

  • Travelling and seeing new things can promote confidence and independence
  • Visiting Hollywood was a dream come true for Diarmuid
  • The trip of a lifetime took in film sets, a tour of actors’ homes and Hollywood Boulevard.

I like to travel and I have been to lots of different places around the world. I have travelled to France, Italy, Spain, England, Wales, Australia and New Zealand my family. I also went to Greece in 2011, where I represented Ireland in Men’s Basketball at the World Special Olympic Games. We won a bronze medal. That was a really good trip, one of my favourites! I love going to London too, I’ve been there loads of times and visited theatres at the West End once with my friends at Cada Performing Arts. I like travelling a lot, I like flying and listening to my music and seeing new places and getting to know new people.

When I was growing up, I was always interested in films and DVDs. I like knowing all the actors and the roles they play. I know about directors and I enjoy writing my own scripts. I like horror films and supernatural stuff but I will watch anything. I have always wanted to see Hollywood to see all the cool stuff you see in the movies. In August I went with my Dad, Mum and sister for 12 days. When my parents told me we were going Dad showed me the tickets. I was so excited, I couldn’t believe it. It was a dream come true.

Diarmuid O'Leary at the Hollywood Sign)Diarmuid O’Leary at the Hollywood Sign

I really enjoyed our trip to Hollywood. The Hollywood sign is massive and it was good to see it in real life. I have a photo of the sign as the screensaver on my phone for a few years! We went to see some of the actors’ houses in Hollywood and Beverly Hills. We saw the street where Cameron Diaz grew up. We saw some of the stars on the ground in the Hollywood walk of fame. I saw Alec Baldwin and Jason Bateman.

When we were walking along, we saw a real live film set. The street was all closed off. There were lots of cars from the 90’s parked by the footpath and a New York Police car. We talked to the crew and they told us they were filming American Crime Story – Season 2: The Versace Murder. It was so cool to see.

Diarmuid O'Leary on a Hollywood Set)Diarmuid O’Leary on a Hollywood Set

We went to visit Universal Studios. My favourite part was the special effects show. They set a man on fire for 19 seconds. They had an astronaut flying. We all laughed and clapped. I loved Harry Potter World too. I tasted butter beer and it was nice. I bought the Elder Wand, Professor Dumbledore’s wand and a Gryffindor tie. We did the studio tour too, it was terrifying we saw sets from Jaws, Jurassic Park, King Kong, Fast and Furious and Earthquake. Jaws jumped up at me and I screamed. The Fast and the Furious bit was my favourite.

Hollywood was really brilliant. I am so glad we went. I would recommend it to everyone!

Author Bio

Diarmuid O’ Leary is 28 years old and lives in Cork with his family. He has 2 brothers and a sister. Diarmuid’s passion is film and performing arts, and he is very involved in Suisha Inclusive Arts in Cork and Cada Performing Arts stage school. There he acts and dances, puts on plays and productions. Some of the participants have disabilities and some of them do not. According to Diarmuid, “When we work together we are all the same. Disability doesn’t matter. Performing makes me feel confident and independent and I really enjoy it a lot.”

Looking at Article 16 of the UN Convention and what it means for safeguarding and preventing the abuse of people who may be vulnerable.

  • The UNCRPD says people with disabilities must be free from exploitation, violence and abuse
  • Research shows that there is a worrying level of exploitation, violence and abuse of adults who may be vulnerable in Ireland
  • New legislation relating to safeguarding must be brought in by the State

What does article 16 of the UNCRPD say?

what does article 16 of the UNCRPD say)The core element of the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) is Article 12, which provides for equal recognition before the law of all persons with disabilities and provides that State Parties shall recognise that persons with disabilities enjoy legal capacity on an equal basis with others in all aspects of life. Importantly, Article 12 also provides that “State Parties shall ensure that all measures that relate to the exercise of legal capacity provide for appropriate and effective safeguards to prevent abuse in accordance with international human rights law…”

Article 16 then provides that persons with disabilities must be free from exploitation, violence and abuse and specifies the actions that State Parties must take to prevent abuse and to protect them from such abuses.

Article 16 does not give a list of types of exploitation, violence or abuse but clearly, in using the term “all forms”, indicates that it encompasses a wide range of mental and physical violence, abuse to include sexual abuse, financial abuse, neglect and negligent treatment, and inhuman or degrading treatment. Exploitation includes both economic/financial exploitation, maltreatment and sexual exploitation. There is a particular emphasis on gender-based violence and abuse.

As confirmed by both the research survey commissioned by the National Safeguarding Committee and the HSE Safeguarding Data Report 2016, there is a worrying level of exploitation, violence and abuse of adults who may be vulnerable in Ireland.

Recent research survey commissioned by the National Safeguarding Committee:  

For the purpose of this research, a vulnerable adult was stated to be someone who is limited in their ability to protect themselves from harm or exploitation, or to report such harm or exploitation. This includes an adult with dementia, mental health problems, physical disability or intellectual disability.

The results of research, commissioned from Red C by the National Safeguarding Committee (NSC), showed widespread public concern that many vulnerable adults are open to, and are experiencing, physical, emotional, psychological and financial abuse as well as abuse based on age and disability (18% based on age and 16% based on disability). Half of Irish adults say they have experienced the abuse of vulnerable adults, either being abused themselves or seeing somebody close to them abused.

The research findings are:

  • Physical abuse of vulnerable adults has been witnessed/suspected by 1 in 3 adults, very often in the home;
  • Over 1 in 3 has experienced emotional abuse;
  • Almost 2 in 5 (38%) think vulnerable adults are badly treated. One in three believes vulnerable adult abuse to be widespread;
  • There is significant public concern about the need to safeguard those who are limited in their ability to protect themselves;
  • There is a lack of clarity over where to report vulnerable adult maltreatment, particularly among the young.

The purpose of the research survey was to prepare a baseline against which to measure progress in developing public awareness and changing attitudes and behaviour.

 

HSE Safeguarding Data Report 2016: 

2016 is the first year of data collection on safeguarding concerns reported to the HSE Safeguarding and Protection Teams. The safeguarding concerns relate primarily to persons with a disability and/or over 65 years who are deemed vulnerable.  Prior to 2015, the HSE elder abuse service did collect data in respect of persons over the age of 65 years, but there was no national system for collecting or recording data in respect of persons with a disability.

There were 7,884 safeguarding concerns managed by the Safeguarding and Protection Teams in 2016. Of these, 4,788 came from a service setting and 3,093 from a community setting. The information given on the referral source of concerns indicate that voluntary agencies are the main source of referrals, followed by Public Health Nurses. The Report also indicates that safeguarding concerns from voluntary agencies are primarily within the disability sector (89%), whereas concerns that arise in the community, reported by Public Health Nurses, predominantly relate to older people residing in the community. It is also to be noted that the figures contained in the 2016 Report are limited to concerns reported to the HSE social care division and do not relate to acute hospitals, primary care or mental health services, nor indeed to abuse in the wider community of Irish Society.

 

Measures to be taken to protect and prevent against all forms of exploitation, violence and abuse:

Paragraph 1 of Article 16 mandates State Parties to take appropriate legislative, administrative, social, educational and other measures to protect persons with disabilities from all forms of exploitation, violence and abuse, while Paragraph 2 obliges State Parties to take all appropriate measures to prevent such abuses. Paragraph 3 states that effective monitoring of programmes and facilities by independent authorities is required. Paragraph 5 calls for legislation and policies to ensure instances of such abuses are identified, investigated and prosecuted. So how has Ireland measured up to meeting our Article 16 obligations?

Currently, the only policy document directly dealing with the issue of safeguarding is the HSE’s Policy Safeguarding Vulnerable Persons at Risk of Abuse.  Although it purports to be a National Policy it is not – it is limited. The policy only applies to services directly provided under the HSE’s Social Care Directorate, which includes older people and people with a disability. The policy does not extend to other services such as mental health, or indeed to persons who are not in receipt of services but who endure abuse in their own home or community. In addition, there are no formal structures to enable the HSE Safeguarding and Protection Teams to liaise with An Garda Síochána or with regulators when issues of safeguarding arise.

A further current deficit is the obligation of the State to ensure that all facilities and programmes designed to serve persons with disabilities are effectively monitored by independent authorities (Para 3). At present, both HIQA and the Mental Health Commission regulate certain services, but a recent HIQA Report points out that large numbers of people are being cared for in different care settings that are unregulated. These include domiciliary care, day services, personal assistance, home sharing, and respite and supported living arrangements. The latter two may in part come within the oversight of the regulator if they are co-located with a residential service. HIQA in this report also points out that if the principle objective of regulation is to protect and promote the rights of service users, then it is necessary to regulate service models that are currently unregulated.

So what is required to comply with the State’s Article 16 obligations?  It is necessary to have robust safeguarding legislation and for the State to acknowledge in such legislation its responsibility to prevent abuse and to protect those who are the subject of abuse from exploitation, violence and harm. The legislation should set out the responsibility for all services, to include financial and consumer services (not simply confined to health and social care), to have safeguarding policies and procedures in place.  An Adult Safeguarding Bill 2017 was introduced in the Seanad in April and received all-party support. Although the detail of this Bill requires further development, it has included some of the essential requirements such as reporting requirements and the right of entry and inspection by ‘authorised’ persons.  The Bill proposes the establishment of an Adult Safeguarding Authority and sets out the functions of the Authority to include the promotion of standards in the safety and quality of services provided to adults at risk, the promotion of education, training and public awareness and the requirement for the Authority to undertake investigations.

If we are serious about promoting the wellbeing of persons with disabilities and respecting their dignity and autonomy, then it is essential that their protection against harm and abuse is put on a statutory footing. It is hoped that the development of adult safeguarding legislation, already before the Oireachtas, will be prioritised to ensure that Ireland does meet its international human rights obligations as set out in Article 16 of the UNCRPD.

Author Bio

Patricia Rickard-Clarke is a solicitor and former Commissioner of the Law Reform Commission. She is Chair of the National Safeguarding Committee, Chair of the Third AGE’s National Advisory Council, SAGE, Support and Advocacy Service for Older People and Chair of the Law Society’s Mental Health and Capacity Task Force. She is a member of the Council of the Royal College of Physicians of Ireland, a member of the HSE’s National Assisted Decision-Making (Capacity) Act Steering Group and a member of the National Disability Authority’s Expert Group.

How the Maltese involved people with disability in Article 33 monitoring of the UNCRPD.

  • Malta ratified the UNCRPD 5 years ago
  • Different bodies have been set up to monitor Malta, to see how they are doing
  • The National Commission for Persons with Disability

Article 33 of the UNCRPD and the Maltese Experience

Malta ratified the United Nations Convention on the Rights of Persons with Disability (UNCRPD), and the Optional Protocol in 2012. At this stage a Focal Point Office was created within the Parliamentary Secretariat for the Rights of Persons with Disability and Active Aging. This Focal Point Office was responsible for liaising with other Government departments and Ministries, Disabled People’s Organisations (DPOs), Non-Governmental Organisations (NGOs) within the disability sector and professionals working in the disability sector to create a National Disability Policy reflecting the UNCRPD articles and then create an implementation strategy to implement the National Disability Policy.

The National Commission for Persons with Disability (NCPD) had been established in the Equal Opportunities (Persons with Disability) Act 2000 as the entity which could protect the rights of persons with disability with regard to discrimination encountered due to impairment in a number of areas including employment, education, goods and services, housing, insurance and accessibility. When the UNCRPD was ratified, the National Commission became the Commission for the Rights of Persons with Disability (CRPD) and took on the role of being the regulator for the disability sector and implementation of the National Disability Strategy. As an independent entity, the Commission expanded its role to include complaints made by persons with disability relating to the articles in the UNCRPD as well as those in the Equal Opportunities Act. CRPD is run by a Commissioner and a Council which is largely made up of people nominated from DPOs and NGOs in Malta. There is also a representative from the two main political parties in Malta, a representative from the church and a representative from the University. At least 50% of the council must be persons who have an impairment or their parents.

CRPD has 30 employees, 16 of whom have a diverse range of impairments. It is very important that CRPD has a high contingent of employees with different impairments, as this shows other employers in Malta that persons with all sorts of impairment are capable of working. This also allows CRPD to have a pool of disabled people who can give their opinion on issues that arise within the disability sector and contribute their feedback to policy documents. It is essential to CRPD that disabled people are able to give their opinion and have their thoughts heard, particularly on matters that will directly affect them. With this in mind, and in compliance with Article 33, CRPD holds regular meetings with representatives of DPOs, their parents, representatives of disability NGOs and other interested parties to discuss issues in the disability sector, legislation, and policy formation in Malta.

After listening to the disabled people we met, we set up meetings so that persons with intellectual impairments could give their opinions in a separate meeting from persons who had sensorial or physical impairments. This was seen as important, as everyone who attended these meetings felt that they would be more comfortable giving their opinions and thoughts with this set-up rather than within a combined group.

These meetings have produced some surprising findings, some of which are in direct opposition to some of the articles in the UNCRPD. An example of this was where a Government Policy stated that residences for persons with intellectual impairments should be small. The meeting of persons with intellectual impairments stated very forcefully that they would much prefer to be housed in a residence with many other people who had similar impairments, and certainly felt that the small number suggested in the policy was too few. In this way, some confusion was caused when these opinions were fed back to the Government as to whether the UNCPRD article or the voice of persons with intellectual impairments should have supremacy. This highlighted to us that the UNCRPD, which was written largely by persons with physical impairments, did not necessarily reflect the opinions of persons with intellectual impairments, and a compromise position was sought.

Legislation passed in the last two years has all been scrutinised by these groups and the CRPD council. This includes a Blue Badge Act, the Maltese Sign Language Recognition Act, the Persons within the Autism Spectrum (Empowerment) Act as well as the amendments to the Equal Opportunities (Persons with Disability) Act mentioned earlier. Currently we are working on the drafting of a Supported Decision Making Bill and the Adult Protection Bill. These pieces of legislation have arisen from areas of the UNCRPD where it was felt by CRPD and the disabled people we consult with there was room for improvement or recognition. CRPD have seen that as these pieces of legislation are passed, parts of Maltese society began to move with us. An example of this is that after the Autism Act was passed, the University passed new regulations to take into account the specific needs of persons with Autism when considering its admission and course programmes.

In this way the CRPD is consulting with disabled people and passing legislation and policies that we hope will empower disabled people in the Maltese Islands and enable them to be more fully included in all aspects of Maltese Society.

Author Bio

Rhoda GarlandRhoda Garland is Executive Director of the Commission for the Rights of Persons with Disability in Malta. Originally from the UK, Rhoda was born with Spina Bifida and after working as an accountant, she moved to Malta in 2006 getting involved with an NGO called Breaking Limits, which was made up of people with a diverse range of impairments. After reading for a Master’s degree in Disability Studies she was asked to research and write the first Maltese State report on compliance with the UNCRPD. Following this she moved to the Commission for the Rights of Persons with Disability as a consultant / Project Manager and became Executive Director in 2014.

Robert Murtagh of Inclusion Ireland examines the participation of people with lived experience in promoting equality and human rights in disability services

  • Inclusion Ireland has been running a project on equality and human rights aimed at improving the rights of people with intellectual disabilities in disability services
  • The project aims to create Terms of Reference for rights committees in disability services and to have these Rights Committees founded in equality and human rights
  • A core aspect of this project has been the participation of people with lived experience
  • There was a big effort to recruit people with intellectual disabilities from around the country to form a steering committee that would lead and direct this project from beginning to end
  • Having a project directed by people with lived experience has been very beneficial. It allowed people with intellectual disabilities to participate in decision-making and empowered them to make change in their own lives.

National-Learning-&-Sharing-event-on-equality-&-rights)Inclusion Ireland is currently running a project since December 2016 funded by the Irish Human Rights and Equality Commission (IHREC) on ‘Rights Committees’ in disability services.

The aim of the project is to develop good-practice guidelines for ‘Equality and Rights Committees’ to be set up in disability services across the country, and for these committees to be underpinned by the principles of equality and human rights. The project also aims to create a training toolkit which will result in people with disabilities delivering training on equality and human rights to their peers.

From the beginning of the project, Inclusion Ireland has strived to ensure that people with intellectual disabilities have been at the centre of the project. It can be all too common in similar projects for people with disabilities not to be involved in the decision-making or direction of the project. Therefore, it has been our intention to ensure that people with lived experience of disability are at the centre of this project.

For this to happen, it was decided that a steering committee – comprised of people with intellectual disabilities – would be established, and this committee would drive it forward for the duration of the project.

Inclusion Ireland has many contacts that are self-advocates who would be fantastic at driving such a project forward. However, we felt it was important that the application process brought in different experiences and voices from around the country.

National-Learning-&-Sharing-event-on-Rights2The recruitment process was treated like any typical job application. People were encouraged to submit an application outlining their experiences, why they wanted to be involved and why they would be a good fit for the steering committee. It was also advertised as a paid position.

With this approach, it was our intention to cast our net as wide as possible and to try and reach out to people with intellectual disabilities from throughout the country. We created an advertisement and put it up on our website and social media (such as Facebook and Twitter). We also sent out the advert to many of the contacts we have gathered here in Inclusion Ireland through our mailing list, with the hope that this would make it into disability services around Ireland.

In the advertisement itself, we set criteria of what kind of experience we were looking for in the committee. It was important to get individuals with specific lived experience of:

  • Living/attending disability services
  • Being involved in self-advocacy
  • Working as part of a group

People were encouraged to apply by whatever means they were most comfortable with. This included by:

  • Email or post
  • Painting or a poster
  • A video
  • Coming in to meet us for a chat

In the end almost 60 people responded to the advert and of those 60, 49 were people with a disability. These were people with an intellectual disability from all over the country, and a large amount of these people were individuals who had not been in contact with Inclusion Ireland previously. Others who applied included family members and professionals, who we then kept on file as contacts for future aspects of the project.

So to get this sort of response, we considered it a great success.

At this point we sat down and looked at each application and scored people based upon four different categories. These were:

  • Experience of living/attending disability services
  • Experience of advocacy
  • What rights/equality means to them
  • Working in a team

It was a very tough decision but we trimmed the list down to 15 and then again to our final 7. Since the formation of the steering committee, the group has done a huge amount of work. They have drawn up draft Terms of Reference for equality and rights committees. They been involved in hosting a National learning and Sharing Event where they presented the work they had done to self-advocates, professionals and independent advocates working in disability services.

The next part of the project will involve 10 people with intellectual disabilities becoming trained in equality and human rights. These 10 individuals will then deliver training to their peers and to professionals, the purpose being to equip people with the tools to promote equality and human rights in disability services around the country.

The work done by the steering group so far has shown why it is important to have an inclusive approach to projects involving people in disability services. The benefits can be seen both for people with disabilities themselves, and also for Inclusion Ireland as an organisation that strives to ensure the voices of those with lived experiences are heard, listened to and acted upon.

People with intellectual disabilities from around the country were given the opportunity to be at the centre of a project that aims to improve their rights in disability services. This meant they were making the decisions and were deciding the direction of the project from beginning to end.

Looking at Article 29 of the United Nations Convention on the Rights of Persons with a Disability, it is concerned with the participation of people with disabilities in public and political life. It states that:

States Parties shall guarantee to persons with disabilities political rights and the opportunity to enjoy them on an equal basis with others”.

It goes on to outline that the convention should

“Promote actively an environment in which persons with disabilities can effectively and fully participate in the conduct of public affairs, without discrimination and on an equal basis with others, and encourage their participation in public affairs”.

Giving people themselves the opportunity to influence policy, and become empowered to make meaningful change should not be underestimated. It is a value we here at Inclusion Ireland constantly strive to adhere to, and would encourage other advocacy and representative organisations to follow.

The benefits of having a project that is led by those with lived experience has also been very valuable for Inclusion Ireland. It has given the organisation the opportunity to reach out and hear from people with intellectual disabilities from all across Ireland. Crucially, it has allowed us to make contact with individuals who have never contacted us before. We have been able to establish links with individuals, to listen to what people with lived experience have to say and crucially, involve them in making positive change.

As a result of applying to this project, some of those who were not successful have become members of Inclusion Ireland’s self-advocacy committee and others have become contacts that we regularly engage with for our focus groups or other events with which we are involved.

All in all it has been a hugely successful project since it began, allowing us as an organisation to establish fresh links and listen to those with lived experience. Individuals with intellectual disabilities have been empowered – through their participation – to make change and promote equality and human rights for people with intellectual disabilities in disability services.

Author Bio

Robert Murtagh is an Advocacy Project Worker with Inclusion Ireland’s Community and Engagement Team. Robert assists in facilitating Inclusion Ireland’s Self-Advocacy Subcommittee and works with other Self-Advocacy groups associated with the organisation. Robert has previously worked in various roles in disability services. Robert holds an MSc. in Equality Studies and a BSc. in Psychology through Science.

A High Court case decides that the Mental Health Act appeal scheme is incompatible with the European Human Rights Convention – Michael Farrell details the events of this case.

  • High Court judgment says that part of Mental Health Act is incompatible with European Convention on Human Rights
  • Young man with intellectual disability experiencing a psychotic episode was detained but it was agreed that the care was unsuitable
  • Appropriate community care place wasn’t available
  • Ireland is now in breach of its international human rights obligations
  • Government needs to amend the law

In an important decision in May 2017, the High Court held that a man detained for 12 months under the Mental Health Act, 2001 did not have sufficient opportunity to challenge his detention.

In the case of A.B. v The Clinical Director of St. Loman’s Hospital & Others[i], Mr Justice Donald Binchy issued a declaration that Part 2 of the Mental Health Act, 2001 was incompatible with the European Convention on Human Rights (ECHR).  This was only the fourth such declaration made since the European Convention on Human Rights Act was passed in 2003. One of these declarations was subsequently overturned by the Supreme Court but the other two – in the Lydia Foy transgender case and the Donegan case dealing with evictions from local council accommodation – led to significant changes in the law.

A.B. is a young man with an intellectual disability who is in need of long-term residential care and 24-hour supervision, which he was not receiving from the health services. In May 2015 he suffered a serious psychotic episode, and was detained involuntarily at St. Loman’s psychiatric hospital for a period of three months. This was subsequently extended for a further six months by his consultant psychiatrist and confirmed by a Mental Health Tribunal.

However, in November and December 2015 and January 2016, the consultant indicated that A.B. had recovered from his psychiatric illness and no longer needed treatment in the psychiatric ward.  He was still being detained, only because there was no suitable placement and supervision for him in the community, and continued detention posed some risks for him.

There had been some moves towards organising a new placement for A.B. and the Muiriosa Foundation, a mental health charity, was prepared to care for him and had identified a suitable premises.  However, nothing had been confirmed by March 2016 and the consultant psychiatrist made a further order for his detention for another six months up to September 2016.  This was confirmed by the Mental Health Tribunal despite objections by A.B’s solicitor, Ms Corona Grennan.  An appeal to the Circuit Court was rejected because under the Mental Health Act the court was required to uphold detention orders unless the applicant could show that s/he was not suffering from a mental disorder. There was no provision that would allow the court to overturn or modify a detention order where, as in A.B’s case, the applicant’s mental health condition was now less acute and did not require detention in a psychiatric ward.

In May 2016, the Health Service Executive (HSE) informed A.B’s mother that sufficient funds were not available to finance his proposed placement.  By then he had already spent six months detained in the psychiatric ward, following the consultant’s statement that he no longer needed to be there, and he had also been the victim of an assault while in the ward.

In June, A.B’s solicitor was given leave to judicially review his detention but the law moves very slowly and by September 2016, when his detention was due to end, nothing had happened in the legal proceedings.  The consultant psychiatrist made a new order for his detention and this time it was for 12 months.  The consultant repeated that detention in the psychiatric ward was not suitable for A.B. but noted that the arrangement for his placement in the community had not yet been made.  He was unwilling to release A.B. until it was in place.  The Mental Health Tribunal again confirmed the order.

By December 2016 A.B. had been detained for more than 12 months, since the consultant had first said that this was quite unsuitable for him. The only reason for his continued detention was the failure of the authorities to provide appropriate care for him in the community. He was to be kept in St. Loman’s until the new accommodation was ready.  Nearly nine months later (August 2017) the placement was still not ready.

A.B’s case was heard in the High Court in March 2017 and judgment was given by Judge Binchy in May.  A.B’s legal team concentrated on the renewal of his detention for 12 months in September 2016.  They pointed out that after confirmation of the order by a Tribunal, which had to be done within 21 days, the only way for A.B. to challenge it was by appeal to the Circuit Court, which had to be lodged within 14 days and was ineffective anyway.

After that there was no procedure whereby A. B. could re-open the issue of his detention for another nine or ten months until the order expired.  If his mental condition improved or if an alternative accommodation and care arrangement became available, he could not apply to a court or independent body to order his release until the order had expired.  He would be dependent on the consultant deciding to revoke the detention order and could not challenge his decision if he refused to do so.

As it happened, the Mental Health Commission, which opposed A.B’s legal action, had itself expressed concern some years earlier that 12 months was too long a period for a detained person  to have to wait before s/he could seek another review of the detention order.

A.B’s legal team pointed out that neither habeas corpus nor judicial review, the methods usually used to challenge alleged wrongful detention, were suitable for a case like this, where the  points at issue would be the applicant’s mental condition or the appropriateness of the placement available to him.  This required a form of appeal that could deal with such issues. The judge accepted that argument.

A.B. then sought to challenge the constitutionality of the legislation where it made no provision for an independent review, requested by the applicant, of the lawfulness of detention for periods of nine or 10 months, or whether it complied with the ECHR.

The judge, rather surprisingly, held that A.B. did not have standing to mount a constitutional challenge, relying on previous judgments that held that only persons whose interests were likely to be adversely affected had standing to challenge the constitutionality of legislation. He noted that the HSE had by then informed A.B’s mother that funds were now available to provide the placement required for her son and suggested that because of this A.B’s interests were not at stake and the issue had become almost academic.  In fact, of course, the placement was still not available even some months after judgment was given in the case.

However, Judge Binchy went on to consider the position under the ECHR, which has been partly incorporated into Irish law by the ECHR Act, 2003.  Article 5.4 of the ECHR states that “Everyone who is deprived of his liberty by arrest or detention shall be entitled to take proceedings by which the lawfulness of his detention shall be decided speedily by a court and his release ordered if the detention is not lawful.

The judge reviewed a number of decisions by the European Court of Human Rights (ECtHR) in Strasbourg in somewhat similar cases and said:

[I]t is clear from the jurisprudence of the ECtHR that a person who is detained for an indefinite or lengthy period by reason of being of unsound mind is entitled under Article 5.4 of the convention to take proceedings at reasonable intervals, before a court, to put in issue ‘the unlawfulness’ of his or her detention. In the context of a renewal order of twelve months’ duration, a person detained under the Act of 2001, has no opportunity to exercise that right otherwise than in the context of appeal to the Circuit Court …”.

Applying this to A.B’s case, he said:

[I]n my view it is clear that the structure of the Act of 2001, in its present form, in permitting the detention of a person suffering from a mental disorder for a period of twelve months, without any opportunity to test the lawfulness of that detention (other than through an appeal to the Circuit at the very beginning of the period) is not in my view, compatible with Article 5.4 of the Convention”.

Presumably because he expected that A.B’s placement would be provided shortly afterwards, Judge Binchy did not hold that his actual detention was in breach of the ECHR but instead he decided to make a declaration under Section 5 of the ECHR Act, 2003 that Part 2 of the Mental Health Act was incompatible with the Convention because it did not make adequate provision for challenges to lengthy periods of detention.  The declaration was issued on 29th May 2017.

What does this mean in practice?  The declaration did not mean that A.B’s detention would be ended immediately.  Under the ECHR Act, the Convention cannot overrule domestic law, but it does mean that Ireland is now in breach of its international human rights obligations and the Government needs to amend the law to allow people in a similar position to A.B to seek earlier reviews of their detention.

The HSE and the Minister for Health have appealed the decision in A.B’s case, but the ECHR case law is very clear and it is surprising that the Government did not seek to change the legislation long ago.  It seems unlikely that the Court of Appeal or the Supreme Court would overturn the decision and if they did, A.B could apply to the Strasbourg Court which would be likely to be very critical of the Irish authorities for their failure to change the law.

And what about A.B. himself?   At the end of August 2017 he had still not been released from detention and provided with the accommodation and care in the community that had been recommended for him and promised by the authorities. The authorities are now faced with a dilemma.  A.B’s 12-month detention order will expire in mid-September.  Will it be renewed and will he continue to be detained in a psychiatric ward that the consultant psychiatrist says is inappropriate and even dangerous for him, and in breach of the ECHR? Or will the authorities finally provide the accommodation and care that he needs?

 

Comment: If the Irish Government does not amend the Mental Health Act as soon as possible it may face the embarrassment of a number of cases similar to A.B’s being taken to the Strasbourg Court. And the ECHR Act needs to be amended to require the Government to respond within a specified time limit to declarations of incompatibility with the ECHR, indicating what steps they propose to take to bring Irish legislation into line with the ECHR and the rulings of the Strasbourg Court.

[i] A.B. v The Clinical Director of St. Loman’s Hospital, the Health Service Executive, the Minister for Health, the Attorney General, Ireland,  and the Mental Health Commission and the Irish Human Rights and Equality Commission, Notice Parties; The High Court, Record No. 2016/469 JR

Author Bio

Michael Farrell, Solicitor is a Consultant in Human Rights Law.

Evan Yacoub details the importance of appropriate responses to the issue of mental health for people with an intellectual disability…

limitations in access to mental health services for people with intellectual disability affects  their dignity…This means that their human rights are affected.

RECOMMENDATION:  Dedicated teams of Mental health services for people with intellectual disability.

Catherine Dupre, an Associate Professor in Comparative Constitutional Law, wrote in 2011 in the Guardian newspaper that dignity “sits in the wider human rights landscape of the European convention on human rights (ECHR)”, and that there was a “sorry picture of how some of the most vulnerable members of society are treated when their need for support is at its greatest. Reliance on dignity has highlighted their vulnerability and imposed a positive duty to treat everyone in a human way that does not degrade or ignore their identity”.

I am of the view that that limitations in access to appropriate assessment and treatment of mental health problems in people with intellectual disability impacts on their dignity. This subsequently means that their human rights are infringed upon. Simon Wessely, President of the Royal College of Psychiatrists in the UK wrote that “Dignity…  is a word that stems from the Latin for worthiness. Easily violated, human dignity is complex. It is dependent upon our fundamental human rights being conferred upon us: the right to be spoken to with respect, the right to be clean, the right to make decisions, be spoken to politely, to live pain-free, eat nutritious and tasty food, the right to privacy and to social inclusion, and the right to independence”.

Poor mental health which is not assessed and treated in a timely manner can impact on how others perceive us, how much attention we can pay to our personal hygiene, our decision-making, our appetite, and our independence.

In 2006, ‘A vision for change’, a government white paper, reported that services were slow to respond to mental health needs for people with intellectual disability. The paper references a report by the Irish College of Psychiatrists which states that “mental health/psychiatric services for people with intellectual disabilities have not kept pace with …developments – they remain under-resourced and grossly underdeveloped in many Health Board areas in Ireland. Some counties have no psychiatric service at all for people with intellectual disabilities.

The white paper also states that “There are still people with intellectual disability and mental health problems who do not receive any service, particularly those with a mild intellectual disability. While there is ring-fenced funding for intellectual disability services, the funding for mental health services within this is not clearly identified. There are also a number of structural barriers that hinder access to mental health services for people with intellectual disability. For example, voluntary bodies do not operate within defined catchment areas and are not funded to provide a mental health service to all those with an intellectual disability who might need such a service. Therefore, individuals with intellectual disability and a mental health problem do not have the right of access to a mental health service that others in the population have”.

A vision for change made a number of important recommendations in this area, namely:

RECOMMENDATION 14.6: Mental health services for people with intellectual disability should be provided by a specialist mental health of intellectual disability (MHID) team that is catchment area-based. These services should be distinct and separate from, but closely linked to, the multidisciplinary teams in intellectual disability services who provide a health and social care service for people with intellectual disability.

RECOMMENDATION 14.7: The multidisciplinary MHID teams should be provided on the basis of two per 300,000 population for adults with intellectual disability.

The paper also stated that the following mental health professionals should comprise the core multidisciplinary team to deliver mental health services to adults with intellectual disability and a mental health problem:

n one consultant psychiatrist

n one doctor in training

n two psychologists

n two clinical nurse specialists (CNS) and registered nurses with specialist training

n two social workers

n one occupational therapist

n administration support staff

11 years on, MHID teams as described by VFG are yet to become operational. Finally however, there are significant developments afoot. The HSE mental health division has appointed a project team to kick start the implementation of VFG guidance in this area. Key issues for consideration in this process are:

  • Mapping current service provision;
  • Building starter MHID Teams for catchment areas;
  • Clarify the clinical pathway in the context of
    • Referral criteria
    • Assessment process
    • Care plan
    • Discharge including communications required.

This specialist model is vital. In addition to its core function in assessing and treating mental health problems in a vulnerable subset of the population which impact directly on their dignity, the specialist nature of the teams will hopefully address:

  • The need for accurate diagnosis given atypical presentations in this population and communication issues which are frequent;
  • The need for appropriate multidisciplinary input given that mental illness, chronic behaviour problems and social communication issues can co-exist and prove difficult to disentangle;
  • The increased frequency of side effects in this group;
  • The increased frequency of coexisting epilepsy and other medical conditions;
  • Specific ethical Issues such as capacity and consent.

It is important therefore to note that whilst change has been slow to arrive, the future looks much brighter. The article seeks to highlight why this is especially important. This is not just about addressing the lack a service provision. This is about dignity, which as Simon Wessely argues, is where one’s pride, self-respect and happiness comes from.

Author Bio

Evan YacoubDr Evan Yacoub MBChB MRCPsych MSc., is a Consultant Psychiatrist for people with a learning disability, and Chair of the faculty of learning disability psychiatry at the College of Psychiatrists of Ireland.

Mei Lin Yap reports on her 6-month placement with Cpl Recruitment in Dublin, leading to a permanent role.

Mei Lin Yap at House of Lords, Bank of Ireland in 2017

On Monday 24th October 2016 the Trinity Centre for People with Intellectual Disabilities and the School of Education launched their Business Partners programme, promoting inclusion and diversity in the workplace. The launch event was hosted by Bank of Ireland at a special breakfast briefing in the House of Lords with a number of companies in attendance. I was invited to speak at the breakfast briefing about my experience in Trinity and about my employment experience since graduation. I was lucky enough to meet with CPL’s CEO Anne Heraty and her Cpl colleagues at this event. Cpl is now an official business partner of the Trinity Centre for People with Intellectual Disabilities.

The Trinity Centre for People with Intellectual Disabilities gave me an opportunity to be the MC of their re-launch in May, 2015. This is where I first met Mary Carroll, the Director of Learning and Development in Cpl. Mary suggested that we meet up again and chat about my capabilities and what kind of help Cpl could provide for me.

Cpl invited me to be one of the first graduates to do a six-month placement with them. I was delighted and excited at this opportunity and so proud to be part of their workforce. I was made most welcome and found them to be inclusive, supportive and accepting of diversity. On my first day I felt really excited, nervous and anxious. As I went in to meet with Mary, she brought me around to all of the departments of Cpl in Percy Place. After being introduced by Mary to everyone, the rest of the day was spent in HR department learning the ropes of working in reception with Aisling Curtis, and Vanessa Scott. They were both very welcoming, and encouraging. In fact I felt very spoiled by the wonderful treatment that I received.

When I started in the company they were filming for the official launch of the LGBT & Ally Network within Cpl.  I was invited to attend and found it all very exciting and I was delighted to be part of it. As a woman with an intellectual disability, inclusivity and acceptance of diversity in the workplace are important issues and Cpl is accepting and supportive. During my first week, I was informed they were holding their Annual Ball 2017. This was an informal evening event and I was delighted to be invited to attend. It was a great opportunity for me to dress up and meet lots of staff from all the branches. I was petrified at the thought. On the night everyone I already knew made great efforts to make me feel at ease and to introduce me to others. I had a great evening.

I have worked with the HR team particularly with Aisling Curtis and Vanessa Scott as they showed me the ropes. I worked in Healthcare in Compliance with Katrina Deegan, Magdalena Basinska and Ishbel McGuckin. I am currently working in the Science & Engineering team with Cara Murphy. My buddies there are Ali Brazil and Anca Popa. It is so great to be given all these opportunities to participate and get to know the people that I work with.

The official launch of the IBM Rainbow Flash Event was on February 23rd in Percy Place and was attended by a fantastic panel of guest speakers, who talked about the importance of diversity and inclusion in the workplace, how to make the network a success as well as sharing learnings from their own individual experiences.

On the 8th of August I had a meeting with Sharon Vize, the Group HR Director of Cpl recruitment agency.  Sharon confirmed that I was being made permanent. You have no idea how much this means to me.  I was on the verge of tears of happiness. I am so lucky and very fortunate to be given this fantastic opportunity.

I must acknowledge the wonderful support of the School of Education in TCD and in particular the support and encouragement given to me by Carmel O’Sullivan, John Kubiak, and Marie Devitt. It is these people who have enabled me to develop my fullest potential and forge a successful path in life.

As a person with an intellectual disability I am aware that when we dream big and others dream big for us then we can achieve our potential. Having a job makes me feel accepted and included and a fully fledged adult who can contribute to society. TCD and CPL dream big and made my dreams come true.

Author Bio

Mei Lin Yap is a regular contributor to Frontline Magazine Ireland, with a keen interest in the rights of people with disabilities, particularly with regard to access to education and employment.

The United Nations Convention on the Rights of Persons with Disabilities sets out clear rights for people with disabilities and family planning, but Irish law is not in line with the Convention, suggests Sandra McCullagh.

  • Article 23 of the UNCRPD sets out the right of disabled people to marry, have families
  • People with disabilities have not traditionally been seen as sexual beings
  • Irish law is quite controlling of people with disabilities and sexual relationships
  • Women with disabilities are often seen as eternal children and have their reproductive health controlled or regulated
  • Irish laws relating to reproductive health in general are not in line with United Nations treaties

Article 23 of the UN Convention on the Rights of Persons with Disabilities (UNCRPD) focuses on respect for home and family. The Article reaffirms the right of persons with disabilities to marry and have a family, to have access to reproductive and family planning information and education and to have the means to exercise these rights. Both the UNCRPD and broader women’s rights treaties reaffirm the right of women with disabilities to decide on the number and spacing of their children. (The word ‘woman’ is used throughout the article for the purposes of brevity. The author also acknowledges that reproductive issues impact on transgender people).

Acknowledging the right of people with disabilities to marry and have children means acknowledging that people with disabilities are sexual beings. The history of disability and sexuality in this country is a sorry one. Forced sterilisation, the absence of sexual education, outdated laws controlling your sexuality (see the now repealed Criminal Law (Sexual Offences) Act 1993) , having your children removed from your care without first being offered supports; these are all part of the characterisation of people with disabilities, and in particular, people with intellectual disabilities as asexual or ‘eternal children’. (You have little chance of finding a condom machine in an accessible public bathroom, but hey, disabled people have no need of such things, right?).

Controlling the reproduction of women with disabilities

Throughout history, women with intellectual disabilities have been viewed as a problem when it comes to sexuality and reproduction. Trent, writing in 1994 called women with intellectual disabilities “the most serious threat to society”, and their fertility something that had to be ‘dealt with’. Non-consensual contraception and forced sterilisation have been employed with the aim of preventing conception. These practices continue to be used in many countries around the world, despite a litany of human rights committees and conventions explicitly declaring them to be human rights violations. The Committee against Torture, the Committee on Economic, Social and Cultural Rights, the Committee on the Rights of the Child, the Beijing Platform for Action and others have criticised States’ parties on this issue.

Women with intellectual disabilities experience multiple barriers to the enjoyment of good sexual and reproductive health. These include a hesitancy among service providers to provide information, limited exposure to sex education, a higher prevalence of sexual abuse, under-treatment of menstrual disorders, lower rates of screening, legal and systemic barriers and a general denial of their right to consensual sexual expression.

When women with intellectual disabilities become mothers, there is little support offered. While societal attitudes towards intellectual disability have changed over the past decades, supports for women with intellectual disability in pregnancy and motherhood remain mostly absent.

In Susan Doyle’s article that follows this one, the difficulties that parents with disabilities experience in childcare proceedings are illustrated. Despite the substantial body of evidence indicating that maternal IQ is not systematically correlated with parenting competence, and that parents with an intellectual disability can adequately care for their children, given appropriate support, negative attitudes towards women with disabilities having children still prevail.

While parenting with a disability can be fraught with issues, choosing to terminate a pregnancy is perhaps even more contentious. Some commentators have suggested that there is an inherent contradiction between abortion rights and disability rights. They point to statistics from some countries that indicate very high rates of termination where Down Syndrome has been identified. Such statistics are indeed worrying, and are symptomatic of a society that does not value the lives and worth of people with disabilities.

The answer to this is not found in limiting the rights of women (including disabled women). Denying women the right to make decisions about their own bodies will not result in a better society for people with disabilities. Writing in the Irish Times in 2015, Rosaleen McDonagh, who describes herself as a feminist with a disability, claimed that disabled feminists are “caught between being pro- or anti-abortion”. In her article, she referred to the use of disability rights by anti-choice groups as “manipulative and exploitative”.

The vast majority of the discussion around abortion and disability tends to focus on non-disabled women, and most often ‘disability’ only enters the conversation when the focus is on pregnancies where there is a diagnosis of a ‘foetal abnormality’. Focusing on non-disabled women feeds into a narrative that denies the sexuality of women with disabilities. There is a lack of acknowledgement of disabled women, their particular experiences of being pregnant in Ireland, and how Ireland’s abortion laws affect them.

In fact, as well as side-lining the needs of women with disabilities in the debate, the focus on foetal abnormality as a ‘legitimate’ reason for abortion also serves to reinforce the idea that disabled lives are of less value. The notion of justifiable reasons for abortion (disability, rape or incest being the most commonly cited) also reinforces the idea that women’s decisions on their reproductive lives should be open to interrogation by society. No woman should have to justify her reason for terminating a pregnancy beyond it being the right choice for her.

Moving beyond choice

In reality, women’s reproductive choices are shaped by the social contexts within which we find ourselves, where inequalities in power and in social and economic conditions influence our decisions. Access to supports and services, financial resources, and family circumstances all influence the choices women make.

Our understanding of what it means to raise children with disabilities is shaped by social and cultural attitudes, and by stigmas and stereotypes. It is influenced by the stories we hear of the dire situation in which families find themselves when they cannot access the necessary supports and services.

We need to recognise the role that such factors play in reproductive decision-making. All women should have the right to make their own reproductive choices. But choice alone cannot be the end goal. We must ensure that women are supported no matter what that choice is. Reproductive rights must encompass the right to end a pregnancy but also the right to have a child, to be supported to do so, and to have the social and economic resources to have a family. Abortion rights should go hand in hand with sexual education, accessible and affordable contraception, pre- and post-natal care, childcare and a range of community-based health, social care and disability-specific supports to enable women to raise their children well, no matter what their support needs.

The role of women with disabilities in the debate

Efforts have been made by pro-choice groups in recent years to adopt an intersectional approach and to be more inclusive of the experiences of a diverse range of people, including women with disabilities, ethnic minorities and trans men and women.

Speaking at the March for Choice in September 2016, Rosaleen McDonagh spoke eloquently of her experiences as a Traveller and disability rights activist:

“As a Traveller woman, many of us have been in very precarious situations. In our relationships with the law and the Department of Health, we have often been pushed around or ignored. We are not considered ‘important’ women…we have stood on the side-lines of feminism for too long…Irish feminism and pro-choice has to broaden and consider voices who are learning the language of liberation”.

It now seems certain that there will be a referendum on abortion in 2018. It is vital that a broad spectrum of women, including women with intellectual disabilities, are supported to engage in the conversation.

This means hearing the voices of women with disabilities. It means being open to challenge where our language around, or pre-conceived ideas of, the lives of disabled people, results in stereotypes being perpetuated. We must ensure that in our efforts to secure reproductive rights for all who need them, we do not devalue the lives of people with disabilities in the process.

We must ensure that the choices we want people with disabilities to have, in all aspects of their lives, extend also to making choices with regard to their own reproductive lives. Referring to her experiences as a woman with a physical disability, Louise Bruton put it so succinctly: “My body is my body and I don’t want that to change just because I’ve moved from the orthopaedic ward down to the maternity ward”.

Author Bio

Sandra McCullagh is an Advocacy Project Worker with Inclusion Ireland’s Campaigns and Policy Team. Sandra coordinates Inclusion Ireland’s research activities and supports the development of policy. Sandra holds a Masters in Social Justice and Public Policy from DCU.