Getting closer

In 1970, when I first met the girl who was to become my wife she was at university coming towards the end of her time there and so approaching the inevitable exams, a stressful time for her. As the exam time was upon her she had some problems with her sight and balance and was briefly hospitalized. Despite that she took her exams, got her degree and returned to live in London with a job as a research assistant. We married shortly after but as we started our life together the doctors continued to try at get to the bottom of what had caused those sight and balance problems. There appeared to have been no lasting effects and she said she felt fine. I was to learn that this was what she wanted me to hear and her to believe. But of course during the investigations and consultations suggestions as to what might have happened surfaced. The one that eventually was confirmed, in a emotional consultation with a senior consultant at a senior London hospital, was MS. It horrified and intimidated my wife because of all the stories of how it could affect her, its random nature, and the lack of any idea of when or how it will go into attack mode. She hated the situation and its implicit threat to her future so much that it was a banned topic and was only to be something we would talk about as an when it became active. She would cross roads to avoid adverts for the MS Society, refuse to watch or listen to any programmes about the disease, it was a very big elephant in the room that we all tiptoed around and pretended to ignore. This went on for 15 years until circumstances forced her to talk to me and others about what it meant for the other decisions we were taking. I still have no idea what she thought about it, and to what extent it lurked in her thoughts and actions through all those 'quiet' years. She would not even talk of it in hindsight, just in the moment when its treat could not be ignored. 

For most of the first 10 years of our marriage I worked in the Architects department of British Rail, that is relevant to this tale as I ended up in their R&D group and pushed myself forward to be responsible for investigating the needs of disability groups using the railways and formulating accessibility design guides for the architects departments. I eventually left because the Chief Architect refused to implement my proposals or do anything to achieve or improve accessibility into BR buildings and stations until regulations would force his hand. The fact that such changes would help the general non disabled public get into stations with luggage, children, etc cut no ice with him. But the point of this part of my tale is that I needed to find out what might be ahead for my wife, and what I might need to come to terms with and deal with. In doing the research I met a lot of disabled people, their support groups, campaigning bodies, and charismatic flag bearers. It was a humbling, extraordinary, fascinating and very educative progress for me from curiosity and ignorance to understanding and action. These were exciting times for disability groups as eventually their voices were being heard in important places and game changing legislation was being formulated and enacted. I once met Alf Morris, the MP who almost single handedly bullied the legislation through parliament. When I was introduced to him he turned to the person introducing me and asked “Is he on our side or theirs?” That reaction gives a bit of a flavour to how difficult many thought getting the changes through and accepted would be. My interest in the topic, the disabilities, the people, the ways of making the built environment more accessible was fired by my concerns as to what my wife and I may face as and when the disease took its toll of her. It may not have helped in that expectation directly but it did prepare me for the realities of serious ill health to come.Today we take for granted the accessibility and visibility of disabled people in the community, but back then they were very much the hidden and ignored part of the population. Before that period of educational experiences I was as ignorant as the rest of the general population on disability issues, the types and extent of disabilities, as well as the difficulties they faced. 

All the time at the back of my mind, and almost hidden from my conscious thoughts, was the lessons on health and risk I had imbued from my mother. She had suffered from a variety of serious health problems through most of her adult life, many cancer related and some barely survivable. She had a long string of serious operations and I think it was twice she had operations she barely survived when I was a child. I would stay with an uncle and aunt while she was in hospital and convalescent home and twice I was taken back home to stand by her bed with other members of the family as it was thought she might not last the night. I did not know that was the reason at the time, that knowledge was deliberately withheld from me. She did survive and I was kept in the dark by mum and dad about what was going on, until much later in my life. Despite the seriousness of her situation in those black days I did not understand that and was supremely innocent in my childhood of the dramas she was living. Again they were very different times and mum was never one to let on about her health issues or indeed anything much else, even what she thought of the things that were important to her. 

So that hidden medical history of my mothers, that I only really understood after I was married, further drove my curiosity about how a person's health and diseases, with consequent limitations, affected their lives. That and the threat of MS to my wife drove me to be curious about the impact the disease could have on her, world around us and how it did or did not cope with such issues. As an architect I wanted to make the built environment inclusive to those with disabilities and limitations. I was also fascinated by what people could achieve despite some hugely limiting disabilities.