One Size Doesn’t Fit All: Disability Society

Disability doesn’t disable individuality. ONE SIZE

DOESN’T FIT ALL

BY ELENA SCIALTIEL

Debbie took over the Disability Society chairpersonship when founder Agnes Valarino passed away over fifteen years ago, and she’s still at the helm of a support and fundraising association which aims at fully integrating people with disabilities in the community and help them live life to the fullest.

“Most committee members are relatives or carers of someone with disability, whether physical or learning, so we have a firsthand insight in the challenges posed,” she says. “It is important to make everyone aware that a policy of one-size-fits-all isn’t viable, because every disability is different, and even two people with a similar disability may express different vocations, talents and ambitions, and we must assist them in realising their potential in their adult life, fulfilling their right to professional careers and to independent living when possible, whether assisted or not.” Legislation has progressed, but the Society still seeks the introduction in full of the UN Convention on the Rights of Persons with Disabilities. One of the most significant achievements in the Society’s history has been the integration of children with disabilities in mainstream schools. The Society is also calling for continuity in care from childhood to adulthood and a smooth transition from school to workplace. Debbie feels that the coordination between Government departments could improve on the cross-agency communication necessary to look at each case in an individual and holistic manner, in order to bring solutions and opportunities to the persons with disabilities, who often find themselves disoriented and stranded when they leave school and are faced with ‘the rest of

their lives’. “Life expectancy is longer and we must plan ahead from their early years in order to offer them a good quality of life.” Continuity of care is paramount. Staffing turnover at St. Bernadette’s, Dr Giraldi and the satellite flats is worrying the Society, especially with Brexit looming and the fate of frontier workers at stake. “Service users and carers build a Two people with a similar disability may express different vocations, talents and ambitions.

relationship, and if it works, they want to keep it consistent. Service users of course experience likes and dislikes, so they may not like the carer they are first assigned to, but once the right one is found and a rapport is forged, they ease into it, and it may become

distressing for the user to be reassigned, especially if they are non-verbal and they feel they’re having trouble communicating with ‘the new guy’.”

Speech & Language Therapists and Adult Physiotherapists at St. Bernadette’s, and everyone relies on the Paediatric Physiotherapist, whom Debbie describes as an ‘absolute angel’.

The Society is advocating the elimination of architectural barriers, at least in new buildings, and in heritage ones whenever possible. They welcome the overdue installation of lifts at St. Bernard’s Hospital, and the project at the Parliament, which is essential to allow any future politicians with disabilities to access their workplace! There’s a call for an accessible cable car, when it gets refurbished, and yet the acknowledgement that the Upper Town, because of its very nature and heritage, will be tricky, if not impossible, to fully adapt to wheelchairs.

“Legislation requires full accessibility in new buildings, so no more entry through the garages, or the back door,” Debbie notes. “Wheelchairs should go in and out the main door, together with everybody else.”

Debbie wishes for the introduction of ‘job coaches’ in Gibraltar, in line with the UK model of supported employment. These are professional figures who assist people with disabilities in finding a job and mediate between employer and employee, when the need arises. UK law promotes financial incentives to employers who need to undertake works in order to accommodate a disabled employee. This can also be of benefit to the business in the long run, because they will attract more customers, with braille facilities, ramps and lifts for example, lower checkouts and counters, wider aisles in

supermarkets and so on.

“People with disabilities do want to work,” she says, “They want to feel productive and contribute actively to society. Society must enable them to do so.” They can often live independently if their home undergoes a few modifications – no steps, larger corridor, adapted shower, lower kitchen counters, bed hoist – but these can be expensive and, as much as the Society is always willing to fundraise in order to support a member, it also laments that Government funds works only at Government estates, while private bills are currently footed by the tenant, no matter the household income.

Assisted living may involve 24- hour care, or may just mean that carers pop around every now and then to check if help is needed in performing daily chores or maintenance. Independence must be encouraged and supported, because we cannot expect parents to take care of their children for a lifetime, and even less so, siblings to take over their parents when they become unable to, or pass away. Most disabilities are permanent, and from birth, while others are acquired later in life, and require dramatic lifestyle adjustments for the whole family, sometimes bearing a considerable financial burden.

Disability can be expensive indeed, Debbie says, as some disabilities entail vital equipment to guarantee a decent quality of life, and in some cases, this may be only partially funded, taking its toll on any budget, especially in a single-income family. Further to disability allowance, the Society calls for carer allowances for parents or relatives who give up says, “and there’s nothing worse than being told that your child has a disability, especially when, as a mother, you’re already sensing there’s something wrong, and the diagnosis just confirms your worst fears. Early diagnosis helps come to terms with it, and prompts treatment and the devising of a life plan.” Debbie Borastero MBE has dedicated her life to volunteer work to improve inclusiveness in Gibraltar for the hundreds of people affected by different degrees of disability, and she is grateful to all those who fight at her side towards this goal. She praises Gibraltar as a safe place for people with disabilities, and although she notes some lamentable episodes of bullying, students are mostly respectful of their peers and actually helpful. “But sometimes the bullied child sadly doesn’t even realise they are being bullied and mistakes this behaviour for camaraderie; this is unacceptable.” In Gibraltar, Debbie appreciates that in such a small community it may be easier to seek help. “The downside, so to speak, is that a child with a specific disability may not meet likeminded individuals in such a small place, and won’t realise they’re not alone unless they fly to UK for treatment or to attend university, like my son did.” The Disability Society will be holding their Flag Day on 12 th June. their careers to become fulltime carers, as well as mobility allowance to adapt one’s car. Debbie gladly acknowledges that the stigma surrounding disability has faded fast: “It no longer is something to be ashamed of and never discussed in public. Talking about it actually spreads awareness, prompts solutions, promotes inclusiveness and support networks.” Having lived with someone with profound disability when she was a young teen, and having a son who is a wheelchair user, Debbie is well aware how disability affects family life as a whole; marriages can be put to the test when a disabled child enters the equation, whether or not one of the parents gives up his or her job and career to become a full-time carer, causing financial and emotional tensions. Having a disabled sibling can affect children’s behaviour and their own emotional development. Debbie laments the lack of therapy for children and teens in this situation, who usually are uncomfortable with discussing it with peers. Akin to parents’ networks, siblings’ support groups should be implemented, under the guidance of a trained professional, for them to express their worries, resentment, frustration, anger - and work them out as natural and legitimate responses to their family environment, and learn to grow from it. “They want to feel productive and contribute actively to society."