Social Challenges

The greatest challenge for children with spina bifida used to be simply survival. After that initial hurdle, concerns focused on orthopaedics and on bladder and bowel control.

Physiological problems from spina bifida are one thing, and medical progress has helped to insure maximum chances of survival and rehabilitation. The challenge on the social level has been one of dependence, especially emotional dependence on the family. Above and beyond that are the perception problems engendered by the neurological effects of hydrocephalus and Chiari II Malformation. Understanding this complex of neuro-psychological challenges is the work of the future with respect to the social adaptation of people with spina bifida.

It has often been noted that in spite of physiological and neurological difficulties, young people with spina bifida nonetheless often displayed strong social and self-expression skills. Children with spina bifida are often very motivated to learn, but social independence is not an issue in the pre-school and early learning years. It is when they have grown older that many factors start to come into play to challenge their social autonomy.

The key for parents is to encourage, at an early stage in their child's development, decision-making abilities and problem-solving skills.

Here is a text written by a teenager with spina bifida, which aptly describes the problems she has learned to deal with and surmount in her every day life and progress toward social independence:

"Self-advocacy is a skill that everyone needs, but standing up for your rights is especially necessary for someone with spina bifida. Because most of us have special needs and therefore require special accommodations, which are not often provided, we have to advocate for ourselves to be able to participate as much as possible. You might need to have a ramp installed at a public place, an accessible bathroom, or a special way to learn something in school. No matter how big or small, let yourself be heard! As a teen with spina bifida, start now to develop the habit of advocating for yourself that you will use throughout your lifetime.

There are so many people out there in the world who don't know about spina bifida. They don't know that you are an actual person with real feelings, and that using braces, a walker, a wheelchair or crutches doesn't mean you're stupid or deserve less than others. So, we need to educate people, and tell them that we're just as deserving as everyone else in this world. You're not disposable, and you have needs. Make those needs known! Tell a storeowner that they're leaving the disabled population out when they design a store with steep stairs and no elevator. Tell a teacher what you need to make the class easier for you. Don't keep quiet and suffer or be left out of something. If you can think of something that can help you, say it! Don't be afraid!

In elementary and middle schools, there were many problems concerning accessibility for me. My parents and grandparents would bring problems to the school's attention, find solutions, and make sure they were enforced. As I grew older, however, I realised by parents weren't always going to be there for me. So, I began to speak up for myself and tell the teachers and administration when something wasn't working for me or if they were doing something wrong.

Advocating for myself was hard, scary, and never easy. Although it's hard, try it, and I know that it will get easier as you continue to make yourself be heard. So, be strong, and never give up. You are an extremely valuable person in this world, and you should be treated like one."

Jennifer Fitz-Roy, 15, Glen Ridge, New Jersey. (Adapted from Insights Into Spina Bifida, Vol. X, no. 6)