Some times a small thing can be an indicator of something huge, something marvellous. For me, yesterday, it was an email. It was a simple typical email. Like any other office, probably anywhere in the world, emails get sent around for people to throw money in a pot to purchase gifts for people who are celebrating big life events: marriages, baby showers, engagement parties. I am away a bit from the office but want to contribute so I have an envelope with money there so for each one I can participate by donating some money. Well, one of those went around wanting to raise some money for an engagement gift for two people at the office.
When my first book on sexuality and developmental disability was printed I was astonished at the reaction and uproar over it's printing and sale. "I Contact: Sexuality and People With Intellectual Disabilities," was a modest little book printed by a small company in Pennsylvania. It received mixed reaction, many loving the simple storytelling way of making points, others thinking the book was vile and that I was a "pornographer." I will never forget the day I opened an envelope to find a letter, blacked with ash, that told me that my book had been burned and that similarly I would burn in hell for sexualizing innocent people with the minds of children. That day was the day I destroyed all of my business cards with my home address on it. I was frightened by the anger and the hate behind the letter.
I remember, too, when I wrote what I believe was the first journal article about supporting people who are LGBT in residential services. I lost contracts for training to agencies who were horrified and who told me that I'd gone "too far." Further, I remember giving my first talk on the same topic at a conference in Ottawa. I was terrified of the reception and the anger that was inevitable so I asked some friends, all closeted, to come to the talk for moral support - all said they would, none came. I didn't blame them, they were terrified that their attendance would give them away, they lived in fear of firing. I gave the talk. I learned then that most people were moderate but that those that weren't really, really, weren't.
Working in sexuality I heard story after story after story from those who live at the blunt end of other's attitudes. Relationships broken up. Love destroyed. Angry parents forcing agencies to forbid relationship. Disapproving agencies using the spectre of angry parents to hide their own prejudice behind. These were dark times where people with disabilities were punished for even the idea of sexuality. Electric shock. Contingent lemon juice shot in the mouth. Facial screening. Boxing gloves on hands, wrists tied to the side of the bed. All punishers for masturbation. Dark times. Dark times indeed.
Sitting beside Winnifred Kempton I was surprised at how small this woman was. I remembered hearing her name in conjunction with what was always called "the Kempton Slides." Hers was the first in depth, fully explicit sex education curriculum ever created for people with disabilities. I should pause here, there were probably others, brave people creating forbidden materials to give forbidden information to those whose sexuality was forbidden. But Winnifred's curriculum had become well known. Somewhere early in my career I ended up at a table, sitting to her right, chatting with a woman who had faced threats and anger and vitriol simply because she believed in the rights of people with disabilities to have information about their bodies and to be treated as adults. I sat in awe of her and could hardly believe that my journey had given me the opportunity to dine with a revolutionary.
Opening an email and reading that someone was gathering some money for an engagement gift is an ordinary thing in an ordinary day. But I stopped, looked at the names of the two engaged. I was sure that they were people with disabilities who worked downstairs in the day programme. I sent an email to confirm that fact. I was right. I realised at that moment that I'd never, ever, been asked to contribute to the gift celebrating the engagement or marriage of someone with a disability in such a casual way. As it would be done for staff, it was simply done for those we serve. No muss. No fanfare. Just an email asking for a couple of bucks to buy a gift to celebrate lives lived.
That email probably means very little to the young staff who would just pull out a fiver and hand it over. But that email, and its simple, casual nature, indicates something absolutely huge. A small thing. An enormous change.
I never thought I'd see it.
And I have.
Hi Dave! I remember many years ago when I worked in residential, there being a training on sexuality for staff. It seemed to be an issue for some staff at that time as we had indivduals who did masturbate. I asked the supervisor if I could miss that training (a rareity) because I had something else that day and told her I didn't really have an issue with the whole subject. Not long after I worked a shift with two other staff who were reporting what had happened at the training and and one staff said "well, they didn't answer my questions, I didn't really get anything out of it!" I quickly piped in "no, they just didn't give you the answers you wanted, you wanted them to tell you that you can send them home when they masturbate or tell them to stop." At that point we all had a good chuckle and I think she said something to me like "get out of my head!!!" I sometimes find in this area the most difficult hurdle still to be parents acceptance of their childrens sexuality. That is awkward for all parents on some level and most parents find their babies growing up difficult, no matter how well they deal with it!
Wow. This is an amazing post.
I feel really strongly about this issue. People with intellectual disabilities need information about sexuality, just as must as anyone else does. Many people still don't agree with me - but, as you've pointed out in your post, the number that do agree is much, much larger than it once was.
There's still a long way to go, but it's good to stop and appreciate how far we've come. Thank you. :)
Thank goodness for your agency. I wish it were like that everywhere.
Hi Dave. Thanks for the memories. We taught a sexuality course to individuals with disabilities in the late 70's and early 80's. It was taught along with many other "life skills" in our local college. The slides by Winnifred Kempton were our guide for the course and were wonderful teaching aids. We also did information sessions with parents, and agency staff in our community and the overall feedback was positive but there was the occasional person who had a great deal of difficulty with the concept of teaching sexuality to people who they perceived as perpetual children. Our students were open and loved the course and once they got over seeing the real pictures in the slides, they all proceede to soak up the information and look at their own sexuality. Even today when I meet some of them socially they mention that they loved the course. I think all of us have a debt to the pioneers in this area like Winnifred Kempton, and yourself for having the courage to defy the perceptions and recognize that all people need to be aware of their sexuality and that awareness is one way to help stop the victimization.
Thank you for telling us about Winifred! Without your post, I probably never would have heard of her, and that would have been my loss. As always, I also was moved by your description of the "pushback" you have received, especially in your early work.
I love this photo. Her smile and her entire expression seems so open, frank, and warm; just as you describe her personality.
I went to bed on Monday night thanking God for bringing David Hingsburger into Allan's and my lives.In 1/2 hour, you got him like few of the other people in his life. You validated my concerns and gave me the support of real 'expertise' so that I can continue to fight for Allan's needs. Someday I hope he will no longer be lonely, and have that special someone to love him. Although his current relationship is likely to end w/o fufilling his dream of marriage. But, at least for the time it lasts, he will have gained the knowledge of an important human feeling. Because he is 51, Allan grew up with all the prejudices you describe. He still isn't sure if sex is good or something dirty. I will be very vigilant in the future to ensure that his support network handles this relationship with care.
Thank-you so much,
This made me cry ... Thanks Dave, and Winnifred, and all the others, for making love possible.
I found your blog just last week after first reading your book "do? be? do?". I have now read through the last 3 months worth of posts, and recommended this blog to dozens of others. You sir are a maestro with the English language. Your ability to create a scene are of a higher quality and I leave your blog after reading feeling uplifted and motivated. Today's post hit home for me as my older sister has down syndrome. It would make me so happy for her to find love and have it celebrated in such a casual way.
In this post you reminded me of what courage it took for you and people like Winifred Kempton to help others see people with intellectual disabilities as whole people. I can't find words to say how much I admire your bravery and how deserving you are of recognition for all that you have done to fight for full humanity for all people, including their sexuality.
Thank you thank you...society is so lucky to have advocates such as yourself to speak out on the importance of sexuality and education for all people. Romance,love and relationships are important to the human race and should be celebrated and enjoyed by all.
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