THIS WEEK SAW disability activists gather outside government buildings to protest overnight against cuts to the personal assistants allowance announced by the HSE last week.
The strength of the protest and the stories that demonstrators told arguably left the government with no choice but to announce that the cuts to the PA would not go ahead.
Here disability activist Rosaleen McDonagh explains the history behind the personal assistant, why it is so important and argues that even if the government performed a u-turn this time around there are plenty of challenges that lie ahead.
THE TERM ‘PERSONAL ASSISTANT’ in the context of disabled people’s lives is part of the 50-year old worldwide disability movement.
The disability movement mobilised itself in the 1960s and 70s. During this period, the civil rights movement, which included the women’s rights movement, anti-racist movement and the gay movement, was the mechanism for disabled people to put our agenda within a human rights framework.
After the Vietnam War, many injured veterans spent long periods in hospital and rehabilitation centres, these men and women wanted either to live at home with their families or to move into their own accommodation outside of a hospital setting, resuming their civilian life. However, with a change in their physical aesthetic, the men who returned to America soon discovered what generations of disabled people had been living with.
The discovery was they were no longer viewed as being part of American society. Ambitions and aspirations were now limited because freedom to enjoy the American dream was designed for non-disabled people. Medals of bravery were meaningless when one couldn’t participate in one’s own life.
The realisation that there was a multitude of blocks for an injured soldier to live on their own became the catalyst for disabled people to come together and work out a plan.
The plan was that they would support each other while living near each other but not in a ghetto-type arrangement. They then wanted to transfer the support they had in the hospital into their own communities. Because they were injured and were now living with an impairment, they did not need medical support, but rather practical everyday support. They fought hard with the American government for direct home care packages.
This means that the budget, which was keeping them in hospital and in rehab, could be used to provide personal care support in the home.
In charge of their own life
The result of this was not only that the veterans moved into their own accommodation but a lot of them now wanted to go back to college or find work. The personal care service needed to be developed so that it wasn’t just care support in people’s living arrangements, that it could be more than just feeding, washing and showering.
The package could be tailored to the individual and would include tasks like driving or supporting some in a college or work environment. Essentially, this personal care service was about putting the disabled person in charge of their own life.
It was also a career opportunity for lots of individuals who didn’t necessarily want to work in a medical environment but who did want to support disabled people in the community.
The movements began to mobilise and there were many elements to this new disability rights movement. Centres for Independent Living sprung up all over America.
The most famous one was in Berkley, California where disabled people were now engaging with governments and policymakers. The relationship with other marginalised groups was very important. Social solidarity is the bricks and mortar of any movement. Allies make for more powerful activism.
Disabled people in the movement were women, a lot are gay, lesbians or transgendered people, some of them were from minority ethnic groups, they range in age groups and economic status. Lovers, mothers, brothers, fathers, partners, co-workers, artists, businesspeople: most of us are one of these.
Due to the history of segregated education, many generations of disabled people have and continue to experience educational disadvantages. The World Health Organisation tells us that disabled people have generally poorer health, lower education achievements, fewer economic opportunities and higher rates of poverty (World Report on Disability, 2011). We needed our friends in Geneva to tell us this?!
Centres for Independent Living meant that disabled people were now engaging with academia and arts. This led to the term “disability culture”. Disability culture is about celebrating disability identity and that our bodies and our minds were to be honoured regardless of our impairments.
The disability movement invented terms like “choices and rights”, “piss on pity”, “access all areas” and “nothing about us without us”. Disabled activists refuted the notion that our bodies needed to be fixed or altered by medical intervention. They talked about the physical and attitudinal environment as being the barriers to our lives.
For disabled activists, having a body that is impaired is understood as being beautiful, unique and sexy. Normalising Disabled people’s lives and experiences means that the disability struggle challenges stereotypes of us as victims – passive, helpless, vulnerable adults.
Instead, disability pride is about presenting ourselves as capable, confident, diverse citizens who are part of the universal experience of living. Notions of tragedy are contradicted by the movement saying, “We’re not super-crips overcoming challenges nor are we tragic heroes; rather we’re people just living our lives and we’re proud of who and what we are.”
The Centre for Independent Living in the late 80s was now 20 years old. It managed to get the Americans with Disabilities Act of 1990 enshrined in American law. This law prohibited discrimination towards disabled people regarding employment, accommodation, education and other areas of living and participating in society.
The word had spread in 20 years to Europe. Now disabled people with all kinds of impairments, not just war veterans, were benefitting from the earlier achievements of the disability movement.
In the late 1980s in Britain, the movement began to get more radical and militant. This radicalisation included direct actions. Disabled people were now on the streets chaining themselves to buildings, being arrested by police, while defending their human rights.
This radical pollicisation of disabled people was a response to Margaret Thatcher’s economic policies. Her catchphrase, “There is no such thing as society (only individuals)” enraged many groups in society, not only disabled people, to suggest a better way of living and a more equal view of society.
Words like “self-determination” and “bodily integrity”, were part of a second generation of the disability rights movement. More and more, disabled people were moving out of long term residential centres and living in their own homes. Parents of disabled children were now opting to have access to mainstream education rather than segregated. Disabled people were becoming more visible in the arts and media.
The next element to the struggle in disability rights was to remove the word “care” from the phrase “personal care attendant”. The word “care” was seen as a leftover from the medical and curative model of disability. We just wanted personal assistants. The movement also wanted to remove the service provider from our lives.
Traditionally, those service providers had a religious or medical ethos, which was often seen as infantilising disabled people. We wanted the right to have our own home care budget between the state and ourselves. This meant we were responsible for employing the kind of personal assistant we felt appropriate to our lifestyles as individuals. The service provider could no longer dictate who we employed or what kind of lives we lead. This is known as the self-directed model of independent living and incorporates employment law so that our personal assistants are protected.
In Ireland, it was the mid 1990s when a group of men and women known as “The Magnificent Seven” set up the Centre for Independent Living (CIL) in 1992. These seven people would have known each other from special school, so there was a long history and a shared vision. The word spread and for the last 15 years, a lot of Disabled people have been able to live full and meaningful lives because they’re living in their own homes.
We’re in charge of the kind of personal assistant support we need. Currently in Ireland, there are 23 Centres for Independent Living. These centres develop and engage policymakers and service providers in the area of disability. The CILs create some employment opportunities for disabled people. They are the hub of disabled activism in Ireland.
Discrimination in our lives as disabled people hasn’t gone away. In Ireland, some of the legacies that the Centre for Independent Living achieved are accessible public transport. Yes, those low-floored buses that are very helpful for prams, we fought for them. The nine grounds of equality legislation, Irish Disabled people were involved in making sure we were part of the named groupings.
Equality legislation, which includes the Employment Equality Act 1998 & 2004 and the Equality Status Act 2000 to 2004, now places a legal obligation on employers to reasonably accommodate people with disabilities, in order to ensure equality of opportunity in the recruitment, selection and employment of all job applicants and staff members.
There is a provision however, where employers do not have to put in place an accommodation if it is deemed to constitute a ‘disproportionate burden’. What constitutes a disproportionate burden under the legislation depends on the cost of the accommodation, the size and resources of the employer, and any grants or public funding that may be available. This is a legacy of attitudinal discrimination. Who wants to pay homage to a historical heritage that only allows non-disabled people access to their club?
The cuts announced on the 30 August 2012 sent alarms bells off. Phone calls, text messages, panic. Other indirect cuts in previous budgets within the disability sector, such as cuts to social welfare, indicated it was only a matter of time before the government would target the personal assistant service. Not only is the service seen as “low fruit” but also it’s seen as a luxury, not a necessity.
At a guess-timation, including all the variables regarding individual disabled people’s type of impairment and the support they need, it’s suggested that the PA service saves the government €1,500 a day per person due to the fact that we’re living in our own homes and not in an institution. If this is not value for money, what is?
Following the text messaging, the meetings and the caucuses began to develop. On Saturday, 1 September, four individuals in Dublin made contact with our comrades around the country. Reassurance and resistance was part of the action plan.
We felt that this announcement deserved a response by way of direct action. Hundreds of Disabled people responded and showed up. There was a few more hundred who couldn’t make the demo for various reasons but helped with the planning and the execution. The background work with the media played a crucial part.
Communicating with journalists by way of ensuring our story was top headlines, we also found ourselves encouraging the media to use less patronising language when writing about disabled people. They rose to the challenge. On a personal level, I was one of the background people. I’m an old veteran of disability activism.
My job was to organise the night-shift and to feed the troops. We did chicken soup and a vegetarian option. Social media played a huge part in helping us mobilise.
In my own lifetime, as a younger woman, I remember what it was like when there was no public or social infrastructure. This meant basic things, like wanting to go to a meeting and not being able to get there because of lack of public transport, or more importantly, because I had no personal assistant services.
The U-turn that the government has made, proclaiming that our services won’t be touched, is no comfort, particularly when we hear they’re now going to be snipping large slices of the budget from the mental health area.
As human rights activists, that’s not what we were looking for.