Sunday, February 14, 2010

Valentine's Day - disabled bloggers talk about love and sex

A few weeks ago I put out a call to make Valentine's Day a day for disability bloggers to take ownership of love and sex. A few people agreed to take on the topic and I was offered assistance to make this into a bigger deal by a guy who runs a sex store in the States. But then, as life happens, I got very, very busy with things. I'd planned on doing a little more promotion, to seeing if I could co-ordinate something with the sex store ... but every day had just a bit too much. And then, suddenly, it's the night before and I'm sitting down to write.

I'd thought about writing about how people de-sexualize my relationship with Joe, preferring now to see him as a room-mate care provider. Turning acts of love into acts of care. Disability turned our relationship on it's head and suddenly instead of outraging some, we inspire others, and all for the wrong reasons.

I'd thought about writing about the challenges of managing to 'keep the flame alive' in light of the disability and the reshuffled roles we have with each others. It is much more complex and complicated than it was before. I need Joe in practical ways as much as I need him in poetic ways. There is a balance that needs to be struck.

I'd thought about writing something comic about power wheelchairs as sex toys. Expensive sex toys. Powerful sex toys. I grinned at the jokes I could make.

But, I don't want to write any of those things.

I'm going to be courageous and tell you simply, the truth. I have loved Joe all my life. I can say that because I feel like life didn't begin until he was there beside me. Yes, before I was disabled, I loved him. After I was disabled, I loved him. Right now, I love him.

But, as I decided to write this, I wished that there was another word beside love. Over all the years of loving, the years where many, if not most in society, told us our love was wrong, I've enduring seeing that word embroidered onto silk hearts and then attached to the paws of stuffed, furry, Teddy bears. I've endured stacks and stacks of cardboard boxes shaped into cardboard hearts and filled with cardboard chocolates - hearts that will never beat, even once, the dangerous beat of forbidden affection. I've endured love trivialized.

Yes, I want another word for courageous, powerful, inescapable love. To describe a love that lasted when no one said it would. To describe love that was born into a world of prejudice and survived into a world of sitcom boyfriends.

But more ...

I read recently that 90 percent of male partners of those who become disabled during the course of the relationship, leave. That only 10% of couples survive the advent of disability. When I look at Joe, I know I found a man that could withstand the cold shoulder of disapproval from friends and family in order to love me. When I look at Joe, I know I found a man that could withstand the cold stares of those who don't understand why he stays when he could do so much better.

There needs to be a word to describe the feeling I have when I know I need Joe, emotionally, physically and practically. To express how it feels to be touched when getting care in a way that doesn't diminish, that leaves me feeling that - though I was helped, I am entirely able.

There needs to be a word for those who love well over time. For those who actually manage 'in sickness and in health'. For those who actually, unasked, scratch your back when it is itchy.

Whatever that word is for what happens between couples like us - I feel it. Every day. Every way.

We don't celebrate Valentine's Day, I could never insult Joe with manufactured love, when he gives it to me - real, right from the core.

So, I'll tell you, I love him.

And hope it gets back to him.


theknapper said...

Your post brought me to tears because I am truly awed by your relationship with Joe. ...You and he have an amazing and very real relationship that is so rich and deep. My only reaction is you MUST stop thinking Joe could do better.....he has the best!(and so do you)

Kowalski said...

Aw, that almost made me cry!

It's still so early here in Europe I hope I can come up with something later today, but I already created a button for you and all the other bloggers who want to participate.
Happy Valentine's Day!

K said...

I have also responded to your call: Valentines sex fest (or not)

I didn't explicitly say it there, but I am very lucky to have the partner that I do.

rickismom said...

A post about love and marriage for the intellectually impaired. :

rickismom said...

Dave, in answer to your question:
"I'd love to hear more about matchmaking do you know of it happening with other couples with disabilities ... do tell."

Dave, so far in our community (as in most communities), the idea of those with intellectual disabilities having the right to marry is still young. And,living in such an insular community, it is harder to find a match that is really fitting for someone with a disability. Most young couples look for someone with a similar family background, similar values, and then the normal factors of physical appearance, intelligence, and personality come into play. Here you have the added problem that it is hard to find someone with all the factors being fitting. On the up side, since in our community, Down syndrome is NOT a valid reason for abortion, we may in some ways have it easier than young adults living in the US and Canada.....
I DO know of a few couples with very mild cognitive disabilities marrying. Sometimes the spouse also had the same amount of disabilities, and sometimes less.
I am sure that we will see more in the upcoming years,as kids who are breaching new fences here grow up.
For couples with physical, not cognitive disabilities, there is a lot of active match-making going on. Sometimes the spouse is "normal", sometimes they have a health problem of some type themselves.

Leslie said...

What a beautiful post! I agree with you entirely about Valentine's Day - why demean one's passion and commitment with such a commercialized canned celebration. You and Joe are so lucky to be together.

Sadderbutwisergirl said...

I responded to your call by posting this: Looking Ahead to Sexual Exploits. Because the only sexual experiences I've had were masturbation and reading sexed-up novels, I couldn't go into detail about anything else. But I hope you all enjoy it!

FridaWrites said...

Thanks for the button, Kowalski.

Very nice post, Dave. It's appalling that disability makes people run.

My post is up:

Sadderbutwisergirl said...

@FridaWrites: I saw your post and I liked it. I personally wrote about my own experiences (and lack of such) because that was what seemed to work best for me and also so that pretty much any reader could relate. Respect from me to you for your powerful words, though.
Word verification: guessi

FridaWrites said...

Sadderbutwiser, I also got a chance to read yours yesterday but didn't get a chance to comment yet because of family being here all day. I'll give comments on everyone's today.

Thanks for hosting again, Dave!

Jenn McWhorter said...

Yes. This. Yes. :)

BenefitScroungingScum said...

I'm a couple of days late, but this is my contribution

Bendy Girl

Kristin said...

What a beautiful tribute to Joe, your friend and lover.

ethan1066 said...

i found this post more sensible to be honest then discussing the sex toys and all other fantasies...really i mean it...

Gwen said...

Beautiful post, Dave. It's wonderful to know that some of us weak, fragile humans are blessed enough to experience the love of a lifetime. I'm so glad you're still happily together after all these years, and I wish you many more!

potenta said...

nice subject but love hurts so i prefere sex. :) thank`s