Last post en-US 3:39 PM by Finetooner. 18 replies.
What do you do when you have to explain what spina bifida is to people who don't know medical terms?? I haven't figured that out yet. I mean, some person comes up and says, so what is your disability? You say, Spina Bifida. Well, not everyone knows what that is and so they say, what does that mean? It means that when I was born my spinal column was exposed because a cell malformation... well, whats a spinal column and what do you mean by a cell malformation? See what Im getting at? I need help with this... anyone who has any advice or comments on this please let me know! Thanks!
~ Lindsey
I just say I was born with a hole in my back that exposed my spinal cord and caused damage.
Basically I tell people I was born with Spina Bifida, course this usually prompts the question of what is that?...I simply say it a neurological disorder where the nerves in the spinal cord did not fully develop, causing partial paralysis
I usually tell them that when my spinal chord formed it did so improperly rendering the nerves protruding through the spine and resulting in them not working so the parts of my body that are controled by the sections of the chord that are damanged are imobile. I usually tell them it's somewhat like a SCI but that it happens while you're cooking in the womb. That sort of makes them understand. It's not 100% accurate to state it that way but it's close enough.
i think im just going to start telling people that im really just lazy and I enjoy "wheeling around" :)
no, but really, why do complete strangers havta get so personal????
Hi Bradley,
I look at it this way. The people who ask questions are the ones who are really curious and do not have any preconceived notions about someone with a disability. They are willing to let us explain to them what it is we have and not form their own ideas. I think more highly of people who ask questions than ones who I know are curious but don't ask.
I agree. I rather have people ask me why I don't walk and what is SB or Hydrocephalus, if they see my shunt, not that its too obvious but sometimes when i get my hair done well the person gets startled. anyways, its better to ask than to assume. sometimes one people assume they make us seem in a poorer condition than what we truly are its just a matter of advocating for ourselves and making the world a more knowledgeable different ablilities friendly type of a place.
Id rather not have anyone really bother me with questions about why im not walking.... I mean, I don't ask the zit faced checkout clerk at the grocery store what caused his acne...Why does he feel to bother me?
wow, sorry, that was harsh of me...
Darn i was on a roll and the window shut off so here it goes again, so do speak. I was trying to say basically that we in my humble opinion, should not be as judgmental, we don't like people going around judging and assuming who we are? what we are capable of doing and why we are the way we are. But in order to make it fair and square you have to "practice what you preach" . Ofcourse I don't go through all the details on first encounters but I much rather educate others and show them "ok, this is me ... I like to do this , i was born like this, and this is what i have achieved and what I am currently capable of. By any means should you disclose information that will make you uncomfortable but try to be as straight forward in telling people the truth of what they need to know to get to know the real You. THink of it as this, its not that they want to be nosy its that we are all wonderous people. I like to think of it in a more mature way. Instead of thinking that people want to see and point out all the differences between us I have learned to see it as they want to know how we connect and what makes us similar.
Going back to the original question I have always told people I was born with a problem in my spine becaues it didn't develop properly so there was a gap in the vertebraes and its at the area which does not allow me to walk independently yet I am able to move around (transfer), move my legs and do many things on my own. That sums it up . Now if they want more details, well sometimes it depends on the person's attitude sometimes I get all general and delicate with few details, if the person is very inqusitive and savvy I get kind of gross and explain things to make their stomaches turn and get a little laugh out of their reaction. Hope this helps.
Spina Bifida literally means "broken spine" perhaps you could tell them that you have a broken spine that occurred during the first 3 weeks of your mum's pregnancy!
If you wanted to tell them a little more then you could say that this 'break' has affected the nerves in your back and this is why you have trouble with your legs - my little girl (who can walk short distances) just tells the kids at school that she has 'wobbly legs'!
Jane
You are so right - the only way is to educate people about it - it helps stop the fear of anything different (but not always). The more knowledge people have the more understanding of what is needed should follow!
Hi
My name is Tina and I have a child with spina bifida and spina bifida is when in the third month the back in formed and doesn't close like it should and a hole is left on the spinal column-----u have three column S.L.T. The higher the hole the more of disability. fluid can build up and cause a sac on the back. The disability can cause u to have a shunt and bladder and bowel control. The higher the hole the more of paralysis. YOu can do and be anything u want to do.
