It begins like this
“Your child isn’t normal.”
In an instant, the world turns upside down. Hopes and dreams lie shattered. Hearts are broken. The future is bleak.
The anguish deepens when conclusions flow from all directions: “A burden from cradle to grave; put (abandon!) him/her in an institution, have another child and get on with your lives; a drain on the family; retarded; don’t overprotect him.”
With that, a vulnerable little person is written off, his humanity denied, his life considered not worth living. Perhaps it says more about the judges than the judged. Even so, the parents are confused. They don’t know which way to turn. As their child – we’ll call him Alexander – grows, they find increasingly that he is excluded from mainstream society. It hurts when people look at him askance, when other children snigger behind his back, that he has no friends, and when parents of abled children boast of their youngsters’ achievements.
It hurts too that Alexander is not deemed worthy of a robust education that will challenge and stimulate him so that he too can reach his full potential. Where he lives when he reaches school-going age, the only educational facility that will accept him is not dignified with the appellation ‘school’ but is referred to as a ‘training centre.’ Inherent in this phrase is the attitude that children like Alexander cannot learn. They can only be trained.
Who will care for him?
But even that insult pales into insignificance when Alexander’s parents contemplate a time when they’re no longer there for him. Who, then, will truly care for him – he has no siblings – and see that his needs are met, that he is safe from harm? Who will help him to reach for his dreams? Who will defend his right to be part of society, to choose how to spend his days, and not be consigned for life to a large, impersonal institution that’s shut off from the outside world and where very little happens to relieve the tedium of empty days?
A prison can take many forms.
In today’s apparently enlightened world, this might seem an incredulous scenario, one from a Victorian novel perhaps. But except for the name Alexander, it’s not fiction. Nor is it something dug up from the distant past. From time to time and all too often, cases of cruel abuse of learning disabled people still make headlines. An online search will yield many such incidents. For example, the group, Disability World lists some horrific acts, all blatant violations of the Universal Declaration of Human Rights and in particular of Article 5 that states: No one shall be subjected to torture or to cruel, inhuman or degrading treatment or punishment.
Such abuse has to be brought to the public’s attention so that it can be stamped out. However, rather than dwelling on the negative, this account celebrates a trailblazing British charity – FitzRoy – that has fought out-dated attitudes to change the way society thinks about and responds to learning disability.
In 1962, determined that her young son, Michael who had Downs Syndrome would not be relegated to the side-lines of British society, Elizabeth Fitzroy pioneered a whole new way of caring for learning disabled people. Her vision was for those most vulnerable of people to be enabled to make their own choices and to live as independently as they could in family-sized homes instead of in the soul-destroying institutions that were then the norm in England and probably still are in many other countries.
Digging deep into her own pocket and working hard to raise the balance of the funds needed, Elizabeth bought Donec, an erstwhile small children’s home in a Hampshire village. The FitzRoy charity was born. Elizabeth’s co-founder and first Chairman of the FitzRoy Board was John Williams, whose son, Huw, was profoundly disabled. In a recent interview, John talks about learning disabled people once being ‘hidden away in sub-normality units.’ “It was legal to refer to them as idiots and cretins,” he recalls.
Five decades on and FitzRoy has evolved into a powerful, person-centred foundation that is constantly adapting to meet the specific needs of the nearly 600 adults it currently supports. This is achieved through tailor-made programmes, the level of support varying in accordance with a person’s abilities. Some people are supported in their own homes, others in residential care, while day and community services offer a broad spectrum of worthwhile activities ranging from art classes to cooking to theatre performances. If a person is capable of being employed or of working in a voluntary capacity, or would like to, say, play golf or learn to sail, FitzRoy’s extraordinarily dedicated staff and volunteers do everything they can to make that happen. No one is expected to fit into a mould or conform to a strict regime.
This is pretty much summed up by FitzRoy’s motto: Transforming lives.
And among the many whose lives have been so wonderfully changed are Alexander and his parents.
Disabilities; never abilities
As an infant, Alexander failed to thrive. His mother dreaded the regular mother and baby gatherings that took place in the Dorset village where they lived. “All the other babies were perfect, reaching the usual milestones well in time. But my troubled little chap seemed to be heading nowhere.” Doctors and the health visitor were unconcerned, saying he was doing just fine.
A career change for Alexander’s father saw the family move to South Africa. “Alexander was way behind his peers but we managed to get him accepted at a pre-primary school,” his mum recalls. Very soon though, he was referred for an assessment. The verdict was that he was ‘ineducable.’ “No help was offered. The psychologist said it wasn’t her role to advise us further.”
That gloomy prognosis set the scene for the years that followed. “It was always about his disabilities; never his abilities. And we always felt as if we had to apologise for him being around.” Alexander attended a couple of schools, one a state-funded ‘training centre’ that was, his mother says, little more than a ‘baby-sitting’ service. The second, a partly privately funded establishment, was only marginally better. Neither had specialist staff such as remedial teachers or language-, occupational- and physiotherapists. “It was as if the education department considered the children not worth the expense of such expertise and intervention.”
Alexander’s school days ended with none of the fanfare that greets able young adults once they’ve written their last exams. Not for him a myriad of exciting opportunities stretching into the future; no newfound sense of freedom. The world was not his oyster but a place that offered only two choices: to stay at home and live an isolated life, or be admitted to institutionalised care. Both were anathema to Alexander’s parents and eventually they found a ‘home from home’ that initially seemed promising but proved otherwise. The hunt resumed and another home-like facility was discovered, this one in a far off town. Managed and funded by the residents’ parents, it was never going to be sustainable and ultimately closed down. “The problem in South Africa is that despite political slogans promising a better life for all, there is very little focus on learning disabled people. The most defenceless people in society are expected to get by on about $120 a month,” Alexander’s mum says. (This in a country whose President is reported to earn $223,500 per month making him the 4th highest paid world leader. )
Returning to England, the family’s journey led them to FitzRoy. “At our first meeting, we knew we were in the best hands. FitzRoy stood for everything and more we’d ever dreamed for our son. One phrase we heard several times was that that disabilities shouldn’t exclude or hold people back from doing the things they want to do.” For Alexander’s parents it was the healing of the decades-long wound they’d sustained when they were told their little boy would amount to nothing.
There were other revelations such as when Director of Operations, Neil Taggart, pointed out that Alexander was not the responsibility of his parents but was an independent adult in his own right. “That was the first time we’d heard that. It immediately lifted a huge burden of worry from our shoulders.”
Leaving home and living independently
Alexander is today happily settled with FitzRoy whose staff ensures he leads a purpose-filled life. For example, he has joined a dynamic art group in a nearby town, enjoys regular cinema outings, and attends an enterprise called Rural Skills where he is engaged in meaningful endeavour like growing vegetables, tending chickens (free range, of course!) and creating woodcraft such as charming reindeer figures that were a sell-out last Christmas. Everything the group produces is of high quality and has a ready market. Rural Skills manager, ex-teacher Gabe Fulford says, “This FitzRoy service is a lifeline for many. Everyone who comes learns skills, builds connections, works in a team, and has a place outside they can call their own.” Alexander feels so committed to his team that on the day his parents were leaving to go abroad for a lengthy period, they asked if he would like to go out to lunch with them. “No thanks,” he told them. “I go to Rural Skills on Tuesdays.”
“Our son has truly left home,” remarked his father. “He’s living his own life.”
It is surely no coincidence that the fundamental right to exercise free will, the bedrock of FitzRoy, is also the heart cry of one of the charity’s patrons, Dame Virginia McKenna, the celebrated star of stage and screen and co-founder with her late husband, Bill Travers and their son, Will, of The Born Free Foundation. This is a global charity that, like FitzRoy is dedicated to the welfare of individuals. In Born Free’s case though, the individuals are wild animals. And although Virginia’s name is almost synonymous with protecting the rights of animals, especially those in cruel confinement, her seemingly fathomless compassion also extends to humans in need. “We must care for people too,” she once told me.
A testament to the people who work in care
In advocating so successfully for the neediest in society and transforming lives in practical and lasting ways, FitzRoy has surely reached the peak of excellence. Or is there still more to be achieved? I asked CEO, Anna Galliford where she sees the organisation going in the next decade.
“FitzRoy is driven by three abiding values: see the person, be brave, be creative. Simple as they sound they have the power to make sure we grow and develop, and continue our mission to protect the right for every person with learning disabilities to live happy fulfilling lives in their communities. These values spring directly from our founders, who rocked the establishment way of thinking and made the idea of homes in the community into a reality.
We have come a long way from the days of institutional living but more needs to be done and it is the responsibility of service providers like FitzRoy to lead this. The transformations we see through our commitment to providing person-centred, tailored support, is testament to the hard work of the people who work in care. This success drives us, and we hope to continue to help transform more and more lives as we grow as an organisation and have more influence in creating a world in which people with learning disabilities have greater choice and opportunity; just as our brave founders did over 50 years ago.”
In short, it’s about putting the world to rights for learning disabled people too.
Photograph of a woodcraft session at Rural Skills by the author.