by Jane Hawking
6
On Campaign
1970, the year of Lucy’s birth, saw the passing of the Chronically Sick and Disabled Persons’ Act. Though it was hailed across the world as a historic breakthrough in asserting the rights of the disabled, the government refused to implement it fully for many years, leaving already hard-pressed individuals to conduct their own campaigns for its enforcement locally. However it did give substance to our many complaints against the various public bodies whose buildings did not allow easy access to disabled people.
Carrying a small baby in a sling on my front while pushing Stephen in his wheelchair, with three-year-old Robert trotting alongside, I was in the vanguard of protesters, campaigning on behalf of the disabled and their carers. A high kerb or a badly placed step, let alone a flight of steps, presented the sort of obstacle which could turn an otherwise manageable family outing into a disaster. Not robust enough – at only seven-and-a-half stones – to surmount the obstacle unaided, I would have to lie in wait, hopefully scanning the vicinity for a male passerby from whom I could solicit help. Then I would have to hand my baby over to any kindly lady who happened to be around. Together, the accosted male, Robert and I would heave the chair and its occupant up or over the hurdle, always wary lest the helper should lift the wrong part of the chair – the armrest or the footrest – which might come away in his hand. Finally I would shower the helper with gushing thanks before we continued on our way. Often to my relief, the helpers would volunteer before I had to importune them. Often, as they lifted the chair with Stephen in it, they would ask in amazement, “What do you feed him on? He weighs a ton for such a slight chap.” “It’s all in his brain,” I would reply.
Our letters of protest to the City Surveyor were met with a superior disdain, reminiscent of Stephen’s early encounters with the bursars of Gonville and Caius. The City Surveyor had never before heard of disabled people wanting to cross the city as far as Marks & Spencer to buy their own underwear, so he failed to see the need for such an expedition – as if disabled people and their families had no right to venture that far. Injustice spurred us into action. Why should Stephen have to suffer restraints on his lifestyle other than those inflicted by an unkind Nature? Why should short-sighted bureaucrats be allowed to make life doubly difficult for him, when he, unlike those smug officials, the scourge of Seventies’ Britain, was using his restricted allowance of life to abundant advantage every day?
After many battles we succeeded in persuading the Arts Theatre and the cinema to make seating areas available for wheelchairs. The University began slowly to revise its provisions for access, as did a few of the more liberal colleges. We took our campaign further afield – to the English National Opera at the Coliseum, where our needs were immediately acknowledged, and to the Royal Opera House at Covent Garden, where help consisted of offloading the responsibility for wheelchair access to two elderly front-of-house attendants who, poor things, while struggling with Stephen up the stairs to the stalls, dropped him. By a curious coincidence, the attitude of the City Council towards access for the disabled mellowed rapidly as Stephen’s fame grew, but that was long after those strenuous years during which I pushed the wheelchair with two tiny children in tow.
Most of the colleges were slower to make adjustments, pleading poverty or the impracticality of adapting historic buildings without contravening conservation laws. Often, college dining halls would be accessible only via the kitchens, with their treacherous obstacle courses of steaming vats, sizzling grills and laden trolleys, and creaking, smelly service lifts already laden with stacks of crockery, trays of hors d’oeuvre and cases of wine. Then our late arrival at High Table would be greeted with pompous disdain, as if such disruptions were too frightfully embarrassing and boring. Our battle with one college, so advanced in its eagerness to admit women but distinctly tardy in its attention to the requirements of the disabled, continued late into the Eighties.
Quite apart from steps and kerbs, there were many unforeseen hazards in the course of everyday life. Once, when taking Stephen with Lucy on his knee out for a walk across the fen, the front castor of the wheelchair stuck in a rut, jolting the frightened occupants out of the chair on to the muddy path. On another occasion, when Lucy was slightly older, we avoided the ruts but came across a rather different obstacle in our path. To cut down on baggage, I had left the house with only my door key and no money in my pocket. As we turned through the wrought-iron gates into King’s College, Lucy inevitably spotted an ice-cream van parked on the verge. She had begun to acquire language at ten months’ old, when, lying on our bed, she had looked up at the light fitting and announced, “lat, lat,” so demanding an ice cream at the age of one was well within her capabilities. Refusing to take my apologetic “no” for an answer, she slid off her father’s knee to the ground at his feet, and staged a furious infant sit-down demonstration on the pathway. I could not carry her and push Stephen at the same time so Robert and I tried to cajole the agitated little ball of royal blue garments and auburn curls, but to no avail. The King’s Choristers paused on their way from the choir school to evensong in the chapel and stood wonderingly round her in a circle, perturbed at the spectacle of so much anguish in such a tiny person. After an eternity an acquaintance of Stephen’s from another group in the Department appeared on the scene and came to the rescue. While I pushed Stephen, he carried Lucy, still loudly proclaiming her indignation, home – without an ice cream.
As we had no time to read newspapers, we relied on my parents for useful snippets of information culled from theirs. Often they would send us bundles of cuttings, sometimes about discoveries in astrophysics, sometimes about benefits for the disabled. Since in one of the latter it was suggested that disabled people could reclaim the cost of the motor-vehicle licence, we approached Stephen’s doctor for clarification. It transpired that the information in the article was ahead of its time: in 1971 there was no mechanism yet in place for reclaiming the licence fee – that was to follow some years later – but Dr Swan suggested that Stephen might like to apply for a disabled vehicle.
This amazing possibility began to open up exciting horizons. If he could manage the joystick controls of an electric car, Stephen would have a new, mechanical mobility in compensation for his diminishing personal movement. An application was accepted, the bureaucratic formalities completed, but just one hitch remained: the vehicle had to be parked under cover near an electric socket to charge its batteries overnight. As so often happened, a solution came from an entirely unexpected source when Hugh Corbett, the Warden of the University Centre at the river end of the lane, responded to our need and unhesitatingly offered Stephen a parking space under cover by a plug.
Although disabled vehicles were criticized for their instability, the electric car – which travelled at the speed of a fast bicycle – enabled Stephen once again to be master of his own routine, driving where he wanted and dividing his working day between the Department in the morning and the Institute of Astronomy in the afternoon. On his return home in the early evening, he would draw up outside the house, hooting the horn, and Robert would rush out excitedly and clamber onto a ledge beside him for the final fifty yards of the journey down to the University Centre, while I would follow on with the wheelchair to bring Stephen back home. As ever no system was completely trouble-free. The car was subject to frequent breakdowns, and often we found it hemmed in its parking place by other vehicles. Once it overturned, giving Stephen a nasty fright, though fortunately no injuries.
In summer the children and I would sometimes take a picnic out into the grounds of the Observatory and visit Stephen in his office in the Institute of Astronomy. The children’s high-pitched voices would race ahead of them along the plush carpeted corridors, like gusts of fresh spring air, announcing their presence to their delighted father. The expressions on Stephen’s face were always a much more powerful measure of his emotions than his spoken words, and on these occasions it was the smile on his face that conveyed his unmistakab
le joy in his children. The Observatory, purpose-built in 1823 with a dome in the centre and residential wings for the astronomers, had the appearance of an unusual but imposing country house, set in carefully tended orchards and gardens, where we acquired a small patch in which to grow our own produce. While the churchyard was ideal for growing roses and lilies, I baulked at the thought of growing vegetables in its soil. Out at the Observatory the children set to with a will, chatting incessantly while they dug, planted seeds and watched them grow. Then at the end of the day we would proudly take our armfuls of beans and carrots and lettuces into the Institute to show Stephen, before setting off for home ahead of him.
Those carefree afternoons spent on the verge of the country proved to be a respite from the increasing trials of life in Little St Mary’s Lane. When we had chanced upon it in 1965, the lane was a haven of tranquillity. By the early Seventies, it was becoming a busy and dangerous thoroughfare to the University Centre, Peterhouse College and the Garden House Hotel on the river bank. Not infrequently a ten-ton lorry would misguidedly come down the lane intending to deliver its load to the Centre or the hotel, only to find itself stuck halfway where the road narrowed. The lorry would then have to back up to Trumpington Street, narrowly missing the façades of our houses and filling our front rooms with fumes.
If this was the main problem by day, by night our ears were assaulted by a barrage of thudding pop music from the Peterhouse so-called music room. The Fellows of Peterhouse had cleverly situated their music room – where regular pop sessions were held – as far away from the main body of the College as possible, in a room overlooking the churchyard. Perhaps they thought that it did not matter if the slumbers of the dead were disturbed. Unfortunately they gave little thought to the living of the neighbourhood – especially the very elderly and the very young – for whom the nocturnal wailings, poundings and crashings were intolerable. Advance warning of an imminent session could be detected in the afternoon with the whistling of speakers, the occasional chord on a guitar, the crash of a lone cymbal. On one such afternoon, Thatcher nodded in the direction of Peterhouse, “Isn’t it lovely, dear,” she said, “I think they’re having a thé dansant.”
More campaigning – this time not about disabled issues – was an urgent necessity. A succession of letters to the Governing Body of Peterhouse, anguished telephone calls in the middle of the night to the porters and even, on one occasion, to the Master himself, eventually produced a compromise, curtailing the hours for full-decibel power and reducing the volume after midnight.
The traffic, a real danger for the three small children, Robert, Lucy and Inigo, who liked to ride their tricycles up and down the road and pay social calls on the neighbours, was a more intractable problem and one which demanded a more organized campaign of meetings and many more letters, most of which did not meet with an encouraging response. However the complexion of the issue changed dramatically on account of a devastating fire which struck the Garden House Hotel in 1972, a couple of years after it had been targeted in a student protest for appearing to support the military regime in Greece.
By the end of the day of the fire, the scene of so many happy family gatherings was nothing more than a charred smoking shell, from which there soon arose ambitious plans for greatly enlarged premises. Architectural considerations apart, a horrendous volume of traffic would certainly ensue, so we, the residents of the lane, opposed the plans unanimously. Just as both sides were heading for a confrontation, we realized that the two apparently conflicting aims were not as incompatible as they had seemed. The managers wanted a new hotel, and we wanted the lane closed and its peace and safety restored; by joining forces instead of opposing each other, both objectives could be achieved, and this was in effect the final result of a tense meeting of residents and managers expertly chaired by the Thatchers at number 9.
If in Cambridge Stephen and I had begun to find ways of adapting and controlling our environment, elsewhere it was more difficult. On their return from Louisiana late in 1970, Stephen’s parents decided to buy a country cottage. I hopefully suggested that a cottage on the east coast would be a wonderful asset for our family. In both Norfolk and Suffolk, though the sand was soft, the terrain was level and manageable, allowing Stephen to be pushed to the very edge of the beach from where he could watch the children at play. My idea was curtly dismissed. “The east coast is much too cold for Father; he would hate having a cottage there,” Isobel remarked. This was puzzling, since Frank Hawking spent most of his time working in the garden in all seasons and all weathers – just like the hardy Mr McGregor in Peter Rabbit – and indoors he wrapped himself in a dressing gown for warmth rather than install more heating appliances, leaving everyone else to freeze in the sub-arctic conditions.
Isobel went prospecting for a cottage with Philippa, who had come back from a two-year period of study in Japan, and returned rapturously enthusing over their find – a stone-built cottage overlooking a bend in the river Wye above a village called Llandogo in Monmouthshire – a place of lovely walks and views, with streams and woods for the children to play in and explore. I had never been to Wales and was easily infected by their enthusiasm, the more so because in April 1971 we had acquired a large, shiny new car, a replacement for the ailing Mini, financed by Stephen’s First Prize in the annual Gravity Competition for an essay which he had run off just after Christmas.
Despite its size – about three times larger than the Mini – even the new car was barely adequate for all our luggage, as I found when I experimented with various ways of loading it for the exploratory trip to Wales in the autumn of 1971. Once the wheelchair, the pushchair and the travel cot were stowed away in the capacious rear section, there was little room for the suitcases. The next expedient was a roof rack, but that created its own set of the problems: by the time I had packed for the four of us, closed the house, eased Stephen into the front seat of the car, folded the wheelchair and lifted it into the back, strapped the children into their seats, loaded their luggage, including the travel cot and the pushchair, and then heaved four heavy cases onto the roof rack, I was so exhausted that the 220-mile journey, three times as far as the distance to the Suffolk or the Norfolk coasts, became an ordeal rather than an adventure. Even when the M4 opened just shortly after our first trip, the distance still proved to be a major drawback.
Nevertheless, when we stopped across the Welsh border for a tea break and saw the road signs in a foreign language and smelt the tingling damp air, our sense of excitement returned. At last we could truthfully tell Robert, who had been asking how much further ever since we left Cambridge, that we were nearly there. Some miles of open hill roads and then winding, leafy lanes brought us at last to our destination. The description we had been given of the cottage was undeniably accurate. Its position above the river Wye was breathtakingly beautiful, commanding an uninterrupted view of the river, the valley and the tree-covered hills on the opposite bank, where in a glow of radiant colour, autumn reigned in all its glory. A stream ran down the hillside beside the house, and a path through the beech woods at the back climbed up over damp peaty undergrowth to the waterfalls at Cleddon. Not so very far away, on the Black Mountains and the Brecon Beacons, a chill wind raged incessantly, testing the stamina of even the toughest hillwalker. The house itself was certainly picturesque – whitewashed, slate-roofed, set into the green hillside, blue wood smoke curling gently upwards from its chimney – and its attractions were undeniable.
This faithful description had omitted several important details, however, such as the fact that the hillside was little short of vertical, so that the only possible movement was up or down, and the only stretch of horizontal surface suitable for a wheelchair was a track a mere hundred yards long to the blackberry thicket at the edge of the wood. Moreover the house itself was reached by a flight of a dozen steep stone steps, slippery with moss and lichen, while inside a long, steep staircase led up to the bedrooms and the only bathroom. It could not have been more inappropriate for
Stephen. Although his father stood by, it took him ten minutes to get up or down the stairs to the bathroom and more than ten minutes to get up or down the treacherous steps to the road. All excursions had to be made by car because there was nowhere else for him to go.
The children loved the place and a part of me shared their enjoyment. The changing colours were mesmerizing and the clear air refreshing. I relished my mother-in-law’s meals. She was an excellent cook, except on those occasions when she chose to economize by serving us fresh-ground elder or brackish nettles from the garden. Unlike Stephen, who would wrinkle his nose in disgust, I also enjoyed my father-in-law’s home-made wine, especially the luscious, golden mead which he fermented from the honey produced by his own bees. After supper we would spend long, lazy evenings in front of the open fire, playing board games until the children’s heads started to loll sleepily. But on those occasions when I went out walking or climbing with Robert, I felt very unhappy at leaving Stephen behind, sitting sadly indoors or out on the terrace. Nowhere could more effectively or more cruelly have emphasized the limitations of his disability. I was upset and baffled. It seemed that the Hawkings considered themselves free of all basic responsibility for Stephen. If we visited them, they would be prepared to help, but otherwise they appeared to disregard the inconveniences of motor-neuron disease.
