Love on the NHS (10 page)

The older men started to bellow in rage, one over the other. "It's people like you," Luke heard one yell, "and your bloody dad that have ruined this country. Idiot!" Then everything went quiet, the three came out and one of the elders said brusquely, "Job's done. See ya." It left Luke determined to never have to call them out again.

Desperate needs do call for desperate measures. Such desperation came when he noticed woodlice crawling out at the sides of his cooker. Luke needed built in units but no matter how many calls or letters made to the housing association, they always put off helping. The organisation had a statutory duty to replace kitchens; it had displayed a large advertisement in its recent magazine sent out about a rolling replacement program. All apartments would be entitled to new kitchens and bathrooms.

Yet they always had an excuse why they couldn't do it. If his social worker or a family member asked the answer was still the same. Luke was greatly annoyed by this inconvenience. The gaps in between his oven and the worktops meant food kept falling in the gaps and rotting filthily. Having an obsessive, somewhat compulsive aversion to dirt it made using his kitchen depressing. The surfaces of the worktops and cupboard doors were a hideous beige, too, and would benefit greatly from replacement.

At first he had not been so bothered. He never learned to cook as a child, he knew next to nothing about food so why would it matter? His limited diet had been his mainstay for many years. Change was bothersome. He had ate nothing but oven chips, peas, boiled potatoes, rice with soy sauce, packaged ham and tinned spaghetti for over a decade. His mother would ask for help from the doctor. None was forthcoming. She would ask for help from the social services. They dismissed picky eating as irrelevant. Luke was the butt of many jokes in school.  People would laugh at how he would eat a steady plate of chips every single day. He was asked, "Isn't that too dry?" and "Why don't you ever have any salad, or sauce on your chips?"

That was before Grace, his sister, introduced him to George. Luke had not long moved to Furchurch. Luke had heard a lot about George, he was a mischievous man Grace had befriended a few years ago. The thought of meeting him was intimidating. Luke had not seen people on a social basis for years and his memory of mischief from school made him wary of anyone with a predilection for hi-jinks. To his surprise, however, George was not only a joker. He was a master of anecdotes, witty one liners and practical jokes - but he was he was also driven. He invited Luke and Grace to join him for lunch at an Asian restaurant. Luke had never eaten Asian cuisine. He was frightened but George had a way of making light of the tension. He turned it into a dare of a sportsmanlike fashion. It was nerve-racking
and fun
.

After eating an exotic katsu curry with rice Luke was elated. He no had to be Mr. Predictable Shy Guy From The Small Village. He could be whatever he wanted. For a few months he set about trying. He would try one new food or drink every day. At first the easy ones: Crisps or sweets he had not tried; the many brands of carbonated drinks; pizzas with toppings he had never had; onion rings and spring rolls.

Then he tentatively scaled more adventurous heights. He ate a myriad range of curries, salads, burgers and burritos; soups, roast beef, risotto and paellas. Authentically cooked pastas and French country soups. Though he never felt more at ease with people or a change in his personality, he did come to love food. George encouraged him to enrol on a part time cooking course. He would attend with Luke so he felt less threatened by the other students and to give advice. George had worked in restaurants himself and knew the tricks of the trade. Being a strong character he did a very good job of supporting Luke. When Luke was tongued tied and embarrassed, George talked with the others and entertained them. Soon Luke could cook. He began doing it at home. "You're a whiz kid in the kitchen now," his social worker, Bart, would tell him. "I've never seen such a well stocked spice pantry!"

Cooking required many ingredients and so bus trips to and from Woecaster were very common. Luke would look for books to read on his journeys to pass the time. He began to get through them in earnest, dipping in before bed too. He would try books by different authors, acquiring an eclectic taste. He still wanted to be like those witty youngsters on Lawson's Creek. If educating himself was necessary, so be it. He read War and Peace and Anna Karenina by Tolstoy, The Adventures of Tom Sawyer and all the Sherlock Holmes stories. He had always read but in his youth only thrillers and horrors. He had read all the Goosebumps. Those and the odd Stephen King, Dean Koontz or Clive Barker were as deep as he delved into the literary canon.

But not wanting to feel stupid and uncultured, Luke was one day browsing a charity shop's bookshelf, determined to find a classic. He may not have gone to university but he could read the same books as people who did. His gaze came upon Tess of the D'urbervilles, a novel by Thomas Hardy. He knew it was a classic - his father had read it and it had been on one of his bookshelves - but it was not the kind of book Luke thought could be interesting.

It would probably be full of old-fashioned people, effortlessly dull people and the romance elements would be overblown. Yet because he had always been frustrated at his sisters' and parents' enjoyment of period dramas,  he bought it. Had he missed something all those years he ran up the stairs when an adaptation of a classic was broadcast? Maybe. Was that why he did not understand women? Because they were romantic and he was not? Then he would try.

XIX

Loneliness was too familiar. It haunted Luke like a ghoul summoning him to the grave. He would cry  in the middle of the night while browsing internet forums. Everyone he ever knew from school and the chat rooms had gone. What to do? He asked his social worker whether anyone could assist. Bart told Luke he would make a referral to a befriending service. Luke was told there were two services of the kind in Duldrum, they would be in touch shortly. A week later, Bart phoned.

"Hello Luke, I'm afraid I've got bad news. Neither of the two organisations I told you about are accepting new applications anymore. They've had to scale back their amount of clients because of funding cuts."

"Oh, that's a shame," replied Luke sadly.

"Don't despair. I know of a counselling service you can visit. You can tell them about how you feel and get it off your chest. Do you want me to arrange an appointment?"

"Yeah, please. That sounds really good."

At the appointment Luke was informed the counselling service did not specialise in Asperger's syndrome. The lady he met looked at him distantly through her glasses. "We'll do an introductory interview. After we get to know you a bit, we'll pass you on to someone else; someone who will be more appropriate."

Luke was passed on to a social group for people with Asperger's. Autistic people attended too and Luke went along a few times. What made him quit was other people's lack of interest in him. The majority spent their time sharing videos on their smart-phones The aim was to make each other laugh. It was tedious. If he asked people about themselves or tried to stir a debate, awkward silence ensued. He had never felt. Had he been diagnosed with Asperger's by mistake? It had never really made sense to Luke. It was only a label and though he had many taxing problems to live with none of these people helped. The meetings were passive and none of the attendees except Luke harboured ambition. Conversation always turned to football and petty observations about their workplace or college. A social life, it was not. The National Autistic Society employee who ran the group was insincere too. He was an habitual smoker regularly exhusing himself to go outside. He would laugh at things others said but otherwise only occasionally joined conversations, all the while glancing round the room in boredom.

Tragically people believed such groups were wonderful - especially those who had never seen them. At least a quarter of the Samaritans Luke talked to, by phone or at the branch, would advise him to join a social group for people like him. It was what so many said after he revealed his diagnosis. How tedious to explain to every one of them how he had tried with no luck. More often than not when someone falls on hard times, the first thing people do is offer advice. The assumption so many make is an action taken will achieve new hope - done, dusted. How convenient it is to overlook the complicated reality. The world is not composed of equal beings possessing equal power and opportunity - luck, the seasons and a person's physical and mental genetics each play their role. It is a very British phenomenon to believe any problem can be solved by seeing your doctor. Or by visiting your local citizens' advice bureau, joining an activity group, exercising at the gym and baking cakes. The British may be most organized but they are also socially inept - even the confident rely on humour as a defence mechanism.

When Luke travelled to his doctors' surgery, they prescribed him with anti-depressants that made him fat, jittery and even more suicidal. Or they referred him to a service who referred him to another service, who no longer existed or were not as advertised. Sometimes his doctors just shrugged. "There is nothing that can be done," they would say, "sadness is just something you have to work your way out of." Medical types and social services were so apathetic that even if Luke was absolutely desperate, he would probably not ask for help. Not now he knew how they were. His maleness was part of the problem. The stereotype of man as a macho provider, a self-sufficient striver is misapplied - and used to belittle men when they reach out. As such health campaigns encouraging men to talk about bowel cancer - or check for lumps on their testicles -achieved next to nothing.

Suicide rates among males, according to statistics, were known to be generally
at best
three times higher than among females. At worst the difference between the two sexes could be far greater. Yet health services, governments, social services, schools and colleges did not want to acknowledge that tragedy. Dwelling on it would certainly achieve little but neither would denial - until it was recognized men were at greater risk of harming themselves, what hope of helping them? But Luke would think, maybe that is how it should be. Perhaps just like Don Quixote, the madman and knight errant of the novel, all men must no matter the odds strive to succeed. 

On the other hand, that novel was written long before now; before many cruelties were invented we take for granted - newspapers and news channels broadcasting propaganda, mindless youths messing on phones, gun-toting drug dealers and power mad police on our streets. And yet, perhaps, these were all just the modern equivalent of what had existed back then. The Spanish Inquisition with its insistence people should all conform was like today's mighty media spreading fear; the common murderers, thieves and thugs were like our drug dealers - seeking personal gain instead of political reform; and the power-mad police were like the officers of the Inquisition performing their roles without recourse to the virtues of courage and humanity.

Another issue affects both genders, Luke had noticed. That is the medical model of disability. It is a model most doctors, social workers and indeed all professionals subscribe to. Most do not even realize they do so, is it so automatic to them. The medical model is the old-fashioned, unenlightened view of disability. It believes it is only the disabled person who needs to change, they must fit everyone else better.

Those following the medical model like to make decisions for disabled people. They assume being disabled makes a person stupid or unqualified to make choices. In the not distant past, within the last ten to twenty years, the medical model was even more entrenched. It was very common for relationships to be forbidden for disabled people. And it is only within the past decade or so, thousands of people with Down's syndrome have been deinstitutionalized. For years they were hidden away in hospitals few people knew existed. A woman with Down's syndrome recently won an appeal in court which let her keep her baby against professionals' wishes - they wanted to take it away! It is clear, then, despite progress there are still people who believe "normal" people know best.

A more modern and inclusive view is the social model of disability. This model says disabled people face barriers because of other people's attitudes. Even from the very professionals there to help them. A whole host of everyday activities non-disabled people take for granted are difficult or impossible for some disabled people. A wheelchair user can not choose to walk yet so many shops and organisations still do not place ramps to the entrances of their buildings; neither do they put elevators inside. Luke once saw a crash involving a tram and a car. Everyone was evacuated from the tram except wheelchair user. The man, who used an electric wheelchair, was left on his own due to no emergency ramp being present. It is such failures to accommodate people with differences that creates disability - that is what the social model says. With Asperger's Syndrome most doctors, social workers, nurses and support workers view it as an abnormal mind. They think the person's behaviour needs to be brought into line, "They need to learn to behave," and this too is a medical rather than social model approach towards disability.

From the view of the social model, Asperger's is accommodated very little at all. In social groups, bars, buses and trains the etiquette of how people talk is very strict. A lot of people with Asperger's can not understand unwritten - or elaborate - social norms. Luke even studied on a ten week training course for social skills. It had a lot of depth and scope to it but he was still shy and awkward. If anyone might have asked Luke, "What can I do to help you?" Or, "How can I understand you better?" The answer was simple.

"Just be more open minded. Even a little." Could people accept there was not only one way for someone to look or behave; not only a single way of doing something; not only one way of approaching someone or talking? The survival of Luke depended on it. Variety was the spice of life - or his extinction was assured.