Living with Spina Bifida


Historically, children in New Zealand born with Spina Bifida were often placed in institutional care. However, much has changed over time and the way New Zealanders think about disability today is very different from the views our society held only a few decades ago. The “medical model” of disability (which considers disability as a personal problem to be fixed) has been overtaken by the “social model” of disability (where individuals with disabilities are disadvantaged by social and environmental barriers to participation in society). This changed view has developed alongside a growing international human rights movement which has promoted concepts such as rights, empowerment, self-advocacy, inclusion and mainstreaming for people with disabilities. This movement has raised expectations among people with disabilities and their families. In New Zealand, one in five people has a long-term disability and we are part of this world-wide social change. Along with other New Zealanders, parents of children born with Spina Bifida and people living with Spina Bifida aspire to living a life that is good, full of purpose, fun and meaning.

Children with Spina Bifida can lead full lives. Most do well in school, and many play in sports. Because of medical advances, about 90 percent of babies born with Spina Bifida now live to be adults, about 80 percent have normal intelligence and about 75 percent play sports and participate in other recreational activities.

Children with Spina Bifida should be provided with opportunities to develop interests and make choices regarding their hobbies and other recreation activities just like any other child. Their interests and preferences will change over time. It is just a normal part of growing up.

Whatever their interest, each experience will provide ways for the individual to develop friendships with peers who have similar interests and to build self-esteem. These experiences will give children, teens, and young adults with Spina Bifida the opportunity to demonstrate and develop social skills and to develop a sense of identity and belonging.

Through active participation in community activities such as play groups, scouting, volunteering, clubs, camps, church activities, classes and sports individuals with Spina Bifida can identify and build their personal strengths, self-esteem and confidence.

A recent study of disabled gym users revealed that when it comes to exercise, disabled people have staying power – they are almost twice as likely to still be using the gym at any given point in time than non-disabled users.

But keeping fit doesn’t necessarily mean sticking to arduous gym regimes; the most important thing is for you to be as active as you can.

It may seem a struggle at first, but find an exercise you enjoy and set yourself achievable goals and you’ll feel fantastic.

There are a variety of groups, organisations and sports accessible to people with disabilities  and over time these will continue to grow.