The power of my disability; the life story of an inspiring woman

Joy van der Stel in dialogue with Yvonne Sellies, Counsellor DEBRA the Netherlands

Counsellor Yvonne Sellies introduced Joy van der Stel, a young woman who turned to be spastic after birth; caused by anoxia. The parents of Joy reacted quite differently in relation to their daughter's disability: the mother was rather sceptical about the quality of Joy's future life. The father had different expectations; he was more convinced that Joy still would have a lot of possibilities. So Joy was really challenged by her dad to do as much as possible with her life.

But is being taken care of in general leading always positive? Joy grew up at home till she was twelve. But after that she entered a boarding school for disabled children. And there, instead of doing as much as she could do herself, everything was taken out of her hands. Joy missed the challenges, and that made her feel more handicapped than she felt before.


It was quite a frustrating dilemma in the 5 years living in that institution. At home she was considered a real human being, a real personality, but in the boarding school she was treated like a patient in the first place. Joy missed in her supporters the belief in what she herself was able to do, in spite of the fact that Joy knew perfectly well her own barriers. And she realized: if you stick to an institutional approach like this, you take the risk to get hospitalized in such a way that it can get very frustrating for your future development.

For all children and grownups with EB there are a lot of hampers to take, but also there are challenges to answer too. And why should you spoil the dreams of handicapped children if they want to be something in their future that is not very realistic? Joy 's opinion is that everybody has his own right to his own dreams, and people as grownups know of course what they are able to do and what they want of their future. If you get older some of your dreams will vanish, step by step you will get more realistic.

After the period in the boarding school Joy moved to Het Dorp (The Village), a community specially built for people with a physical disability, completely provided with all the facilities you need for your daily life. A very protective surrounding, totally made fit for the life of handicapped people; the only inhabitants of this little village. Was it a friendly meant ghetto? Positive discrimination? (The village as it was does not exist anymore in the Netherlands. The integration of disabled people with a common community is preferred nowadays). Luckily Joy finally got an apartment of her own, and she is quite able to live there as independently   as is possible. She is married and has a beautiful daughter.

Concluding advises of Joy

Being mentally and psychologically strong   is a must for diasabled people; sometimes you even need to have real challenges to change negative energy into positive feelings. And always hold on to your aims, targets and dreams. If you have EB there are sure a lot of restrictions in your life you have to cope with, but also think of the possibilities you have; enjoy life!

After this presentation the audience was given the opportunity to buy a book, written by Joy: "The power of my disability; the life story of an inspiring woman".

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