Like many others I eventually succumbed to the lure of Facebook and have steadily built up my list of friends - some are great friends of old, others I have met more recently, mainly through work.
The danger I've found of being open about your disability on facebook is that you can attract 'devotees'.
For those of you not in the know 'devotees' are apparently aroused by disabled people not because of their vivacious personalities, sharp wit, intelligence or flirtatious nature, but purely because of their disability.
Perhaps devotees think they are doing us a favour because they think no one else will go for us. My personal experience is that there are plenty of very 'normal' people who do want to go out with disabled people because of their positive qualities, rather than just because they have a disability.
There's far more to me than my disability so when a 'devotee' picks me out and asks me to be their friend it is really not flattering in the slightest. Ironically in my younger, less experienced and at times more deparate days I might have been flattered.
Nowadays it just seems perversed that someone should pick me out when they don't even know me and for some reason has the audacity to think I might be so desparate as to sign up to be their friend. Who's the saddo, not me.
4 comments:
Emma, very well stated. Being a 4'8" male with Kniest Dysplasia, I understand those that befriend one because they feel sorry for you and those that truly get to know your heart. There is nothing wrong with having compassion for another human being, but when it comes to the point of assuming someone has no friends because of their disability, then that borders on ignorance.
Heh thanks for commenting. I haven't come across many blokes with Kniest apart from my son and seeing that he's only 4 he's not exactly a bloke yet... I do wonder how the issues of being short are different for woman with Kniest compared to men - what do you reckon?
Hi Emma, I guess I'll try to give you the male perspective on living with Kniest. I think males and females have similar physica issues, such as the aches and pains that we go through, like the spinal and neck issues. I know I have been having isuues with my neck and numbness in my extremities from time to time. I also go through issues with my endurance when it comes to walking long distances. So with a lot of the physical issues, I think we are a lot alike.
Now I think mentally dealing with Kniest and societies reactions to it can be slightly different. In the United States, a woman who is short seems to be accepted a lot more than a man who is short. Guys have to be held to a macho standard by peers that prejudices a lot of people's perceptions. An example is when a guy is trying to meet women. A guy my size is immediately dismissed as cute, but not taken seriously like the average heigth guys are. A woman may enjoy my company, but still has that feeling of what her peers would think. In my case, my personality was a little different, because I believe to live life like there is no tomorrow. So I didn't let rejection keep me down and kept at it. Eventually, my personality, sense of humor, persistence, and honesty won over. When I met women online, I would tell them from day one how tall I was. Many women felt that they couldn't deal with that, so they made excuses to break things off. But the ones that could see life as more than that were the ones I wanted to know anyways. So I felt it turned into a win-win situation for me in the end.
I think you notice that a lot of people with dwarfism lack self confidence. I believe that they are the ones that are more concerned about what people will think than truly finding their own happiness. I learned to overcome that early in life and am so blessed that I did. I like to help those that lack the self confidence they need, and make them understand that their is so much more to them than they could ever know. And they need to let the world know what that is.
I am sorry for rambling, and I do understand that being a short woman that you have dealt with rejections like this to. And you seem very confident and sure of who you are, which leads me to believe that you have overcome like I have.
Here is a link to more information about the genetics of Kniest Dysplasia that was prepared by our genetic counselor and which has links to some useful resources for those dealing with this condition: http://www.accessdna.com/condition/Kniest_Dysplasia/218. There is also a phone number listed if you need to speak to a genetic counselor by phone. I hope it helps. Thanks, AccessDNA
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