The definition of just what constitutes a "worthy life" is the issue here, and how the preservation of that precious life is adjudicated. I'm sure this man would love nothing more than to merely have to cope with a feeding tube (essentially a straw) and to work to pursue potentially beneficial speech and swallowing therapy... but .. ooops, I forgot .. he has loving and supportive "guardians" nearby who work to preserve his life and make his days as comfortable as possible.
Were he not a genius, do you then believe his "guardians" and loved ones would work to see that he was starved to death because he required speaking and eating assistance to stay alive (in his case, a lot of assistance)? Is Terri any less a worthy and valuable life than Stephen Hawking? The love and the desire of the "guardians" and loved ones to help keep their dear disabled one alive for as long as God designs is the difference. Life is precious -- and where there is life there is hope.
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Up to 1974, I was able to feed myself, and get in and out of bed. Jane managed to help me, and bring up the children, without outside help. However, things were getting more difficult, so we took to having one of my research students living with us. In return for free accommodation, and a lot of my attention, they helped me get up and go to bed.
In 1980, we changed to a system of community and private nurses, who came in for an hour or two in the morning and evening. This lasted until I caught pneumonia in 1985. I had to have a tracheostomy operation. After this, I had to have 24 hour nursing care. This was made possible by grants from several foundations.
Before the operation, my speech had been getting more slurred, so that only a few people who knew me well, could understand me. But at least I could communicate. I wrote scientific papers by dictating to a secretary, and I gave seminars through an interpreter, who repeated my words more clearly. However, the tracheostomy operation removed my ability to speak altogether.
For a time, the only way I could communicate was to spell out words letter by letter, by raising my eyebrows when someone pointed to the right letter on a spelling card. It is pretty difficult to carry on a conversation like that, let alone write a scientific paper. However, a computer expert in California, called Walt Woltosz, heard of my plight. He sent me a computer program he had written, called Equalizer. This allowed me to select words from a series of menus on the screen, by pressing a switch in my hand.
The program could also be controlled by a switch, operated by head or eye movement. When I have built up what I want to say, I can send it to a speech synthesizer. At first, I just ran the Equalizer program on a desk top computer. However David Mason, of Cambridge Adaptive Communication, fitted a small portable computer and a speech synthesizer to my wheel chair. This system allowed me to communicate much better than I could before. I can manage up to 15 words a minute. I can either speak what I have written, or save it on disk. I can then print it out, or call it back, and speak it sentence by sentence.
Using this system, I have written a book, and dozens of scientific papers. I have also given many scientific and popular talks. They have all been well received. I think that is in a large part due to the quality of the speech synthesizer, which is made by Speech Plus.
One's voice is very important. If you have a slurred voice, people are likely to treat you as mentally deficient: Does he take sugar? This synthesizer is by far the best I have heard, because it varies the intonation, and doesn't speak like a Dalek. The only trouble is that it gives me an American accent. However, the company is working on a British version.
I have had motor neurone disease for practically all my adult life. Yet it has not prevented me from having a very attractive family, and being successful in my work. This is thanks to the help I have received from Jane, my children, and a large number of other people and organisations. I have been lucky, that my condition has progressed more slowly than is often the case. But it shows that one need not lose hope. Stephen Hawking
LIFE IS A GIFT FROM GOD, IS PRECIOUS AND WHERE THERE IS LIFE THERE IS HOPE.
