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More than a Disease

Our family worked with an organization that provides a fabulous service for children with special needs and their families. Once we were involved directly with them, I noticed that they describe each child served, by their disease or disorder. The public profile was 90% about the child's affliction. When I saw Ben's profile, I was really sad. He was listed as Epileptic with an Unknown Genetic Disorder. An Internet generated description of Epilepsy was included. A photo of Ben, his age and hometown were also listed. The many people who looked at the website would not see Ben as a person who likes to swim, play with his brothers, be outdoors and watch Bob the Builder. They would see a poor child who is handicapped and needs help.

I emailed our agency contact and suggested they add some other facts about each child - what is their favorite food, activity, movie, book, etc. The questions and answers would depend on the child's development, but it would give a more rounded view of the child. I offered to follow-up with the families so this would not add extra work to the organization.

It was met with resistance and even strong emotion. I was told that their process was successful and  they were not changing it since it worked well in the past. Looking back now, I should not have emailed my suggestion. I should have called or met with the person directly. Email communication can be misleading and easily misconstrued. I think my suggestion was taken as a personal attack, when I only meant to offer a helpful idea.

In most of the places that Ben receives services, organizations use a person-centered approach. This means the person comes first before the disease. For instance, rather than saying "the disabled child", I try to say "the child with a disability." Language is powerful and if we can change a few words around so that someone is seen in a different view, I am all for it. Person-centered approach also means that agencies ask about what Ben likes and dislikes, what are his strengths and weaknesses, what makes him happy, sad and what are the best ways to help him in a tough situation. Knowing these personal items about Ben help people get to know him and see him as a person and not as a representative of a disease or disorder.

There is a lot more to the person-centered approach and I listed a few websites below to give you a more detailed explanation. The items I mention are only the tip of the ice berg - the person-centered approach is meant to give the individual power and control over decisions, plans and life.

I did not succeed in educating the person in the agency who did not want to change their procedures. I did make contact with another person in the agency who agreed it was a good idea. I relied on them to bring the idea in front of a larger audience. I will not know if changes were made for several months. The impact this organization has on a large audience is huge - they may not realize they shape the way our kids are seen, but they do, intentionally or not.

* If you have noticed I am being vague, you are correct. I do not want to call out this organization. They do wonderful work and have many volunteers who help. The heart of the organization is in the right place. I only want to raise awareness. People with disabilities can be represented as individuals with needs, wants and dreams who happen to also have a special challenge in their life. We are all learning, and I am hopeful that education will help change come about.


  1. Well said. I often think of how people who don't know Ben view him. When I talk about him to people I try to explain what a great kid he is. How much joy he brings to all of us. But I can see that they can't get beyond my first sentence that he doesn't walk or talk. They are stuck and can't envision that there is so much more to Ben then what he can't do. We all have labels of some kind, too fat, too skinny, too short, too shy, too aggressive, too weird etc. Deep down we all want the same thing... to be happy. Ben's already there.
    Michele Williams


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