Redesigning Health and Social Care

I I am currently writing some course materials on identity, health and wellbeing. I have not given much attention to thinking about my own identity in relation to health until now, but on reflection it seems quite important. Before being diagnosed with asthma in my mid-thirties, and borderline high blood pressure in my forties, my contact with health professionals was minimal, whereas now there are regular check-ups with practice nurses and occasional consultations with doctors. Whilst these encounters are usually reasonably satisfactory, I often feel that my sense of identity in the consulting room is quite different to that in many other aspects of my life.  

As time is limited in these appointments there is necessarily a focus on the medical aspects of my being. Should I happen to mention something else that is going on in my life it might at best be briefly acknowledged, or at worst ignored as irrelevant to the business in hand. One practice nurse, who thankfully has now moved on, was terribly patronising and would make generalised statements starting with phrases like ‘I find that asthmatics …..’. I used to leave those appointments simmering with anger and feeling thrown back into a frustrated child-like state of weakened identity. In the end I started wearing a jacket and tie to appointments with that nurse to try and assert a more powerful identity for myself in the room! 

I can also remember experiencing annoyance with well-meaning friends who suggested that these long-term conditions were probably brought on by suppressed anxiety, anger or other emotions which could be sorted out with one brand of psychotherapy or another. Now I do agree that mind and body are linked and I know that the role of genetic factors in physical health is still being debated in some quarters, but this just did not fit with my sense of identity and I resented the implications of emotional vulnerability suggested by these people. Whatever the causes of my medical conditions (as I am choosing to view them) my sense of identity clearly plays an important role in my willingness to engage with others in finding ways of managing them so I can get on with my life.

Otto is a 21 year old Millwall fan. He likes James Bond and Bob Marley. He loves ham pizza and holidaying in Devon. Otto is an aspiring actor, appearing in local stage versions of Macbeth and The Canterbury Tales and is soon travelling to Las Vegas on a bit of a promotional gig. Like many men of Otto’s age his dream woman is Fearne Cotton, and one day, when he is older and feels ready for the responsibility, Otto hopes to become a father.

Sound like a bit of a catch, ladies? Well apparently not, because Otto, like many young men, is struggling to find a girlfriend, and this month his mother has gone public in the search for a suitable girl for her boy.

‘Mother wants sex for son’ screamed the headlines. ‘Everyone else his age is having sex and enjoying being young adults, so why shouldn’t Otto?’ she asks. She has even been quoted as offering to fund a visit to a prostitute for Otto to lose his virginity. Which is enough to embarrass any young man, but what Lucy Baxter is trying to do is not embarrass her son but highlight society’s attitudes to learning disability. For Otto also has Down’s Syndrome and his mother believes social attitudes towards people with learning disabilities are preventing her son from having a sexual relationship.

Lucy wants her son to live a ‘normal’ life and experience all the things that ‘everyone else’ does, but the story also raises many wider questions:

What is a ‘normal’ sex life if there is such a thing?

Is every 21 year old Millwall fan enjoying a healthy sex life?

Should men automatically assume a relationship with a girlfriend will lead to sex?

Does sex have to be part of a healthy and fulfilling ‘normal’ life?

For a society so obsessed with sex, with sexual images surrounding us on television, advertising boards and magazine covers, we are strangely prudish about some aspects of sexuality. People are happy to see topless models on page 3 but recoil in horror when a woman tries to breastfeed a baby in public; men lust after semi-clad women in the pages of Nuts, FHM and Maxim, yet berate their teenage daughters for going out wearing short skirts.

In fact we are surrounded by sex – usually women, usually heterosexual and invariably without a disabled individual in sight. Yet when it is brought to our attention as something which exists outside the glossy images we see of perfect women in magazines, we shy away from the reality of sex in everyday contexts.  Not everyone experiences sex. Even less experience a loving relationship. Not every relationship automatically leads to sex. Sex is a messy, complicated affair as well as a seemingly vital part of being alive. But some people are either directly or inadvertently excluded from finding this out in the first place. And this is Lucy and Otto Baxter’s point.

Lucy believes her son has every right to have ‘the same opportunities as everybody else’. This he does. But the way the story has been received in the media says a lot more about society than just our attitude to disability and sexuality. In one interview the presenter suggested to Lucy that Otto’s girlfriend would have to be a ‘very special’ girl, because Otto was a ‘very special’ son. Isn’t every son special? Doesn’t every mother want a special girl for her special son? Lucy has brought Otto up to be ‘normal’, so isn’t labelling him as ‘special’ going against this? But the judgements were not reserved for Otto. Lucy has also been judged. She is repeatedly described as ‘single’ and ‘never married’ – what relevance does this have for the story? In one report she was described as ‘a respected member’ of the Down’s Syndrome Association. Was the use of the term ‘respected’ suggesting her behaviour in other matters might not be quite so ‘respectable’? Reports have suggested Lucy is morally-lax because of her unmarried status and open attitude to sex, and both mother and son have been criticised for encouraging a sexist attitude towards women.

With a bit of luck Otto’s plight will promote a long overdue debate about sexuality and disability. But what the case also shows is that disabilities don’t stand in glorious isolation and neither does sex. They are complicated by cultural norms, social opportunity, family relationships, moral expectations, gender inequalities and much more besides. Just like any 21 year old Millwall fan, Otto will have to deal not only with the sex, but with the complicated world it takes place within. This will question his identity not only as a young man with Down’s Syndrome in search of a girlfriend, but as a young man with particular expectations about social relationships, and a young man with many different interests beyond his disability which remained largely unreported in the newspaper coverage. This is a story about much more than Otto losing his virginity.

I have thoroughly enjoyed reading Tim Rushby-Smith’s ‘Life as a Disabled Dad’ column in The Times Online over the past few weeks.  Accounts of parenthood from both the perspective of disabled people and fathers continue to be a rarity in the mainstream media, making this column particularly unique. Tim writes about the day-to-day experiences of looking after his three year old daughter Rosalie, and some of the specific challenges arising from being a parent in a wheelchair. The column raises questions about how children come to understand concepts of normality and difference when living with a disabled parent, and how parents in turn frame and manage their child’s experiences. Whilst Tim is happy to see his daughter accept his wheelchair as part and parcel of ‘normal’ family life, it saddens him that this version of ‘normal’ also involves seeing Dad in frequent pain.

The responses from readers have been intriguing.  Many comments imply that Tim’s daughter will inevitably grow up to be a stronger, more compassionate, caring and tolerant individual as a result of living with a disabled parent. What lies behind this assumption? Why might we presume that personal or familial experience of one form of ‘difference’ necessarily equips us to accept and celebrate others? When the government announced that it was creating an overarching Equality and Human Rights Commission, some members of the existing organisations aired concerns that specific marginalised groups might benefit at the expense of others under the new body. The early debates demonstrated fears that the public’s tolerance of diversity might only be stretched so far; acceptance of one type of difference did not necessarily mean tolerance for all.

Tim’s column is helping to get the subject of parental disability out in the open and certainly presents a more positive account to that located in research and policy documents on the experiences of children with disabled parents, much of which suggests that they are more likely to face social exclusion than their peers. However, I can’t help but wonder whether readers’ responses would have been quite so generous and optimistic had Tim’s circumstances been different. If Tim had a learning disability, or accompanying mental health problems, if his family life was less stable, and he had no means to earn an income, what kind of comments might we have seen then?