Spina Bifida Conference-SBAA

[Barb]

So, did anyone go to the SBAA Spina Bifida Conference in Tucson this summer? If you did, how was it? Did you learn anything new and exciting?

[eng188]

My mother did. She is a volunteer therapist for the mentally ill, and she just put out a new book---I think it's some sort of workbook. She had a booth, I believe, and was able to sell (or give out) a whole bunch of copies of this book. She was thrilled. I went a while back when it was in Anaheim. It was pretty good. But I can't say I'm thrilled, weatherwise, to go to Orlando next year.

[angel]

I went and had a great time. I spoke my mind about several things that i feel need to be addressed more.

I met a lot of great people and saw some of the friends i made from last year's conference. The hotel was FABULOUS!!!! And the 5:30 tequila shot on the patio always started the night off just right!!! lol

Angel

[Barb]

I went and had a great time. I spoke my mind about several things that i feel need to be addressed more.

Angel
Tell us more:)

[Dodger67]

Yes, please "speak your mind" to us too...

[angel]

Well i had a few issues with some of the things i heard my first year there. To be quite honest i was PISSED off the WHOLE time.
Lets start with the first day of last year. There was a day for adults with sb only!!! We had breakfast and then the parents were asked to leave. you would not believe how many refused to go!!! Not only that they were SPEAKING for their adult children. It made me so mad i just wanted to stand up and ask them what part of for adults with spina bifida only did they not get??? No offense to anyone on this board but that was insulting to a lot of us there who would have liked to have an open discussion.
Then in the same session they were talking about how there is a 70% unemployment rate among the disabled yet they were stressing volunteerism!!! WTF was that why not stress employment. I know not everyone can there were some there that were obviously impared enough by their sb that they couldn't hold down a job but the MAJORITY can do something. If you are well enough to volunteer then why shouldn't you work for money. Why are you good enough to work for free and NOT good enough to get paid for it!!!! I actually asked someone that was on the board and they said they agreed with me but you can't stress employment because it makes the parents angry. We are adults here and you are worried about making some mommies and daddies angry. IT ISN"T THEIR LIFE TO CONTROL ANYMORE THEY ARE ADULTS!!!! I thought the SBAA was there to help with actual issues and i know they do great things but i thought they were way way off base here.
Then i go to a dating seminar. I wanted to see what the experiences were and if they were anything like mine were before i got married. They were talking about something (i forget what) and i chimed in and said when it comes down to the real meat of what makes a marriage work it really doesn't matter if you walk on your two feet, use crutches, or use a wheelchair. I said that my husband isn't disabled and my disability really has nothing to do with our relationship. Then the guy leading the session said "That brings me to another point you don't have to be with an abled bodied person to make yourself more acceptable. Stop discriminating against yourselves" I almost exploded. I don't feel like i sold out i felt like i married a man that i love and that loves me and to say that being with someone able bodied made me feel better about myself really hacked me off. I may have taken it wrong I will say that. But i felt like they were trying to make our world smaller instead of expanding it.
One thing about this year i thought was a hell of a good idea (coming from the same man that pissed me off last year) was they need something at the expo about non latex condoms. Most of the people with SB are allergic to latex. Now i don't know if there was anyone sleeping together there or not but there was a whole lotta hookin up going on there!!!! I don't know how far it went and i think that providing a booth at the expo for the adults was a fabulous idea. I am sure it won't happen though. Don't want to upset the parents by letting them know that we are sexual beings!!!!

I know there is more i just can't remember it right off the top of my head right now.

Angel

[eng188]

I'm glad they at least touch upon these things, even if somewhat poorly. It's a start. As for me, I am single, always have been, and likely always will be, by choice. I love my peace and solitude. If I were to date, I'm not sure which direction I'd go. Dating either a biff or an able body could be seen as selling out, for various different valid reasons. Sounds like there were some very interesting conversations going on at the SBAAcon, even if they could be improved upon.

I find in any gathering of disabled people I participate in, I wind up disagreeing with most of what is said. C'est la vie.

[Dodger67]

"Dating either a biff or an able body could be seen as selling out, for various different valid reasons"

What does it matter who I do or don't date?
Having SB is not a political party or a religion or something to which one "owes allegiance".

[angel]

I agree Dodger!!! We are all one people end of story!! I think us discriminating against ablie bodied people is just as bad as them discriminating aginst us!!! We are a lot more alike than we are different!!! I went for someone i love, who loves me (not the physical package i come in although i think he loves that to) who i can get along with, who has the same ideas and goals for our lives, who is good to our children, who makes me laugh, and a million other things about him that are wonderful. To me that is all that matters finding someone you can connect with. Spina Bifida is a tiny detail in the much bigger picture. My life isn't spina bifida, it does not control my life, it does not identify who or what i am. It is a detail I was true to myself and that is what matters in my opnion!!

Angel

[eng188]

Exactly! One needs to make one's own choice, and there are good and bads to any choice.