This is one of our top posts; it’s been quietly gaining “Likes” even though it sank down our pages. A couple of years have passed since we published it, but the issues remain as strong as ever. We felt we all need a reminder about what Jeanesse is campaigning for.
Jeanesse Abela is a bright young woman, Chair of an NGO, and works for a communications company. Jeanesse has cerebral palsy. A twist of fate when she was born prematurely at seven months gave her a life long legacy – society calls it a disability. She calls it her life. Jeanesse sees her abilities where others see her disabilities. Looked after by her father, now in his sixties, she sees her long-term future defined by a society that wants her institionalised, dependent and living an archetypal, archaic view of a disabled person.
Yet, Jeanesse argues, as a wage-earner, tax payer, doer and thinker, and above all as, well, just another person, she has a right to choice and independent living. The loaded term ‘disability’ which she sees as ordinary living, full of equal possibilities and abilities, strips her of basic rights through the barriers imposed by society. In Malta, Jeanesse’s future is pointing to life in homes for the disabled or an old people’s home. Remember, she’s only 34!
She been instrumental in setting up L.A.N.D – Living Ability Not Disability, a non-profit organisation which promotes independent living, with the right human resources and equipment, for young people labelled disabled. Malta, it seems, has yet to get its head around the concept of dignified living for disabled people, gainfully employed, living in communal, care-assisted housing, sharing (if needed) the cost of their care, rent, and so on with flatmates – within their individual communities. Housing like this reduces the eventuality of institutionalising them, can cost the public purse less, and gives them a life worth living. At the most basic level, it helps alter the perpetual medicalisation of disability.
Here’s what Jeanesse is saying, and it makes sense….
Everyone has the right to have choice and control in their lives. People with physical impairments can take their own decisions, study, hold jobs, love to mingle and entertain like any non-disabled person. Right now, if the main carer at home of a disabled family member can no longer provide care or passes away, the disabled person ends up institutionalised at St. Vincent de Paul Residence and becoming inactive, unproductive and withdrawn from regular social life, and therefore loses all prospects of living fully like their non-disabled counterparts. This is unacceptable.
There are solutions…
It is vital for us to live within the community. Here, we can pool in our resources based on self advocacy. Living in accessible accommodation available from a housing authority, two physically disabled persons (gainfully employed) can employ a live-in carer of their own choice splitting costs equally. Government provides reimbursement, subsidy or direct payment of total costs involved by at least 40 %. In doing so, government plays its part and is putting money were its mouth is – helping to give credence to the ideal of an inclusive society.
The steps to take?
a.. Assist us with professional help to assess our needs
b.. Find out what persons with physical impairments can do
c.. Let us design our own support service
d.. Let us employ our own staff (live-in carer, personal assistant)
e.. Let each situation dictate and describe the job-description of any staff in point (d) = give us flexibility.
Dr Shaun Grech, a disabilities studies researcher at Manchester Metropolitan University, believes Malta needs to urgently change its policies, politics and approach towards thinking about and addressing disability: “Jeanesse’s request is not and must never be framed as a charitable plea. These are issues that in countries such as the UK have been addressed decades ago! Today there is the UN convention and a plethora of rights and treaties that Malta like other countries is signatory to. It is about time that the Maltese government emerges from its fossilised and patronising attitude and harsh treatment of disabled people and their families, and other disabled people have to support Jeanesse in reacting and fighting back with whatever it takes. Malta needs an independent disability movement for the very first time, of genuine activists, and not dormant structures coopted by the government! There has never been a better time to support national heroes like Jeanesse, in contesting a structure designed to silence disabled people, make them conform, nullify and invisibilise their existence, cast them as pitiful charitable cases, and devalue their worth as human beings.”
In the meantime, Jeannesse is doing her bit – working things out, giving of her time to others like her, working for them via L.A.N.D and not giving up. This is what we’d call ability and action. Jeanesse is also highlighting that disability has to be cast away from being an object of charity and medicine.
Photo: Paul Kelly