WHEN her daughter Jess was small, Bernice Hardie used to dream about being able to take her family to a desert island, “because we didn’t have a problem with disability: it was everybody else who had the issue”. Celia Webster, who also had a daughter, Maia, with Down’s syndrome, remembers “endless appointments and assessments” that “only told me what wasn’t right, but gave me no encouragement or emotional support”.
At a gathering on Saturday to celebrate the tenth anniversary of its opening, they reflected on its effect in their north London community, including new polling which suggests that residents have more positive attitudes towards social mixing of people with and without learning disabilities than the national average.
In addition to a monthly Sunday service, WAVE now includes a weekly Challenge Group for families with babies or toddlers with additional needs, and, since 2016, a WAVE café with a mixed-abilities team. The aim of each, Mrs Hardie explained, was to “break down the vicious circle of avoidance that leads to social segregation”.
A market researcher for 35 years, she described work to investigate the impact of WAVE as her most challenging project to date. It included nationwide polling of more than 2000 people, 40 interviews with people involved with WAVE, and a further 225 interviews with people in Muswell Hill. The national survey found that, while about 53 per cent of people had little or no contact with someone with a learning disability, the remainder had, at least, some.
The “apartheid” described by Mrs Webster was evident in the findings: 57 per cent rarely or never mixed socially with someone with a learning disability (or without a learning disability for those respondents who had one), and almost four in five (39 per cent) completely rejected the possibility of such mixing, having no intention doing so.
But the remainder were at least open to the possibility: 28 per cent were grouped as “Experienced pioneers”, and 18 per cent as “Willing explorers”. This latter group were more likely to be younger and people of faith, and constituted 31 per cent of the people polled in Muswell Hill.
“Places that make it easy for people with and without learning disabilities to mix provide a potential antidote to feelings of social isolation and social pressure that are often so evidenced in our community,” Mrs Hardie concluded. “We started off thinking that we were doing this work to help other families with learning disabilities, and discovered along the way that there is mutual joy and encouragement and learning that comes from it.”
While there was much to celebrating on Saturday, the presence of barriers to mixing, including prejudice, was explored in depth. Mrs Hardie said that “social segregation has been the expected norm for most people over the age of 30.” People with learning disabilities and their families had relatively low expectations of having fun at mixed gatherings, Mrs Hardie’s research showed, perhaps because of “bad past experiences, or it may be a self-protection mechanism”. “I would rather be alone than with people who don’t accept me,” one WAVE interviewee commented.
In her speech, Maia Webster described attending a school where “people wouldn’t talk to me, and I would sit on the bench in the playground, lonely by myself.” She had been moved to “a kind school, and people said ‘Hello, Maia,’ and they talked to me.’” At WAVE, she felt “really included, as people come up to me and introduce themselves, and I go up to other people and introduce myself, and people are really friendly.”
Summarising lessons learned from the past decade, Ingrid Skinner, a member of WAVE from its beginnings, encouraged people to “relax”.
“We really don’t need to worry about saying or doing the wrong thing when mixing with people of different abilities,” she explained. “In our experience, people are very forgiving. Doing things together is a learning experience for everyone.” Giving people roles was also recommended, as a way to reduce both awkwardness and anxiety.
In a speech that drew on the words of Jean Vanier, Mrs Webster described WAVE as a place “where you won’t ever feel left out.
“Many have found that they attended in order to give support, but in fact they find that they receive”. Her personal goal was to establish more Challenge groups: quite of the few of the mothers who came to the existing group reported having not left the house for weeks, or months, with their new-born baby.
The wider climate for those with disabilities was not ignored. Andy Merriman, an author who lives in the area, described how austerity and welfare reforms had resulted in high levels of poverty and reduced standards of living for people with disabilities. His daughter Sarah had been asked at one assessment how long she had had Down’s syndrome.
Their joint presentation produced much laughter, and included a recreation of Sarah’s early years, in which she had used her condition to avoid doing chores (“Sarah, can you please go up and get your shoes?” “No, I’ve got Down’s syndrome”). Having recently secured a job as a waitress after appearing on the BBC documentary Kitchen Impossible, she is one of just six per cent of people with learning disabilities in paid employment. Yet her generation was “the first given some opportunity to flourish,” Mr Merriman said. “There is now an expectation of a life fulfilled.”
“I think things are better,” Mrs Hardie said, as the day drew to a close. “I always remember a point when Jess was very little, and we went to a friend’s birthday party, and there were all these little children playing outside on the grass, and I had my tiny little baby in my arms and I just thought ‘She will never be able to be out there playing with these other children.’ It hasn’t been as bad as that, but it has been a struggle, simply because people are scared of difference.
“But, as a society, we are embracing difference more . . and I hope that in ten years’ time, when you have a child, you won’t be thinking ‘I wish I could take this child off to a desert island where we could be safe,’ because this will be the desert island where it’s safe. . . I hope that’s not too ambitious a desire.”