I am very upset this morning and rightfully so. How can you write and or promote an article about a group of people you are not fully educated about? Now those people are upset and in a uproar, as in the Spina Bifida Community. Nicole Ari Parker & Boris Kodjoe are creating a platform for there own agenda and speaking for people they aren’t fully educated about, or talked to. They are making it seem like having Spina Bifida is this horrible disease. It is not a disease its a Birth Defect and it’s not horrible and it’s not a battle and that was the wording of B Scott who wrote this article. SB is not a battle, it’s just a person who has to find other ways of getting through life and there is nothing wrong with that!! 98 percent of people with SB are happy with having Spina Bifida. they just want to be accepted and have the same opportunities as everyone else. We don’t feel sorry for ourselves and dying for someone to make a cure!! We just want to live life. Nicole and Boris are making it seem like it’s stopping their daughters life and it not a death sentence or stopping her from achieving anything she dares to dream. I grew up with a normal childhood I went to sleepovers, and dances, hung with friends as a teenager, and dated, and I did chores around the house and learned to be independent just like so many others with SB who are college graduates and mothers and fathers among other great things. I feel they need to teach their daughter the same instead of making it seem like her life is so hard. Especially when it comes to cathing herself which is something they stated is such an issue for them. So many people with SB learned to cath at a young age. When I was a kid I learned to cath myself by age 7 and I went to the nurses office and it was none of the other kids business why I used the nurses bathroom. That’s what my mom would tell me. Eventually I could cath in a regular bathroom and no one knew the difference and I carried a purse with me with my supplies and my mom just always reminded me a lady goes nowhere without her purse. But my main concern is don’t speak for a people because you have a new show coming out and you haven’t even reached out to adults who are living it to tell their side. You are speaking from your POV looking at your child who you may think is imperfect but that’s life it doesn’t mean she still can’t be great!! No one knows what it’s really like until you live it. Please speak to the SB community and see what there concerns really are and create a platform for that. Their are parents & adults with SB who can’t pay medical bills or afford a new wheelchair or medical supplies like catheters, there are people who can’t get dental insurance, and people with SB who can’t find jobs or housing to live independently and can’t get government funding. Young adults with SB who are ready for college and can’t afford tuition and want to drive but can’t afford hand controls on a car or a accessible van with a ramp, and the list is endless. Create a platform so we can talk about that! We aren’t concerned about a cure so we can be “Normal”. We were born to stand out!! Who cares about a cure? We Don’t, I’m happy being who I am. I hope you guys read this and really understand the negative platform about Spina Bifida you are creating. I’m glad you guys are talking about it because it is a Birth Defect that no one really talks about or supports but ironically it’s one of the most common Birth Defects. But please speak with people who have experience with Living with SB not “Battling” or “Suffering” so we can have a real dialogue about what the real issues are!!
Thank you, Tatiana Lee
A Person Thriving with Spina Bifida