Wednesday, May 30, 2007

Joao's World

My new friend, Joao, wrote the following - an account of his experience as a disabled man with spina bifida living in Portugal. In exchange, I wrote a post for him to post on his blog, for which I'll give you the link tomorrow, once it's posted. Please help me welcome him to my blog. It's always interesting to get another's point of view - thank you for sharing yours, Joao!

(Following are Joao's words, slightly edited by me. Joao wrote his piece in English, although it is not his first language. My goal in editing was simply to make the reading a little smoother).

Since my first contact with Amy, I wanted to write a kind of a testimonial concerning Spina Bifida and parenthood. Amy sounded like a fantastic mom, almost as good as mine… I was looking forward to finding a point of view about being a mom with Spina Bifida, and not, as usual, a mother with a child with Spina Bifida.

Living in Portugal is not a great thing concerning primary health care. Our struggle, I think, concerning survival relates directly with how we can't quickly find the right persons to treat us and give us security, improving our quality of life and technical support. I think people, because of this particular subject, are afraid about having a baby with Spina Bifida. Not being able to deal very well raising a child who will give them some very specific problems. They forget, sometimes, that these babies can also give them some very specific happiness.

So, can you imagine what people with Spina Bifida think about having a baby with these characteristics? Speaking for myself, and knowing what my mother dealt with during my infancy, I tell you: I am afraid about that and I fear for the health safety of my potential baby.

That's the reason why I, at 33 years old, still haven't thought about having a kid. The technical questions concerning fertility, sexual problems or even finding a mother for the child do not bother me at the moment. They did, actually, but that has subsided some with learning to not be so anxious about that.

Amy emailed me and asked me for a text about being a parent with Spina Bifida. I have emailed her back and told that I thought I would easily find one. But I couldn't find a Portuguese parent with Spina Bifida. Actually, I belong to the board of the Portuguese Association for Spina Bifida and Hydrocephalus (ASBIHP). Therefore, I know lots of people with these disabilities in Portugal. But, even so, I could not find the right person to talk to. This was sad for me (although not surprising), because I know that, specifically, boys from this country with Spina Bifida, generally speaking, do have technical knowledge about Spina Bifida as well as their sexuality. ASBIHP played and still plays a very important role in this issue, I think. But there needs to be more.

Anyway, why not having a child for now? For my part, it is not a technical question, I think. It is more of a social question. I feel to care for my child, giving him/her the necessary love and support would be a very difficult issue. This could be impossible for some people because they do not have the job, the money, the car, the accessible house and all the other needed stuff to support, shall we say, a happy childhood and, of course, a happy parenthood.

How can we change this situation, considering that this particular point of view cannot be easily extended to other people without scientific methods? Well, we may have to start over at the beginning: from health care (specially primary health care) to specific sexual advertisement at schools and clinics, I think there should be a focus on these issues from now on.

From me to you… well, yes, maybe I would like to have kids, even though right now it is not a priority for myself. As for other people, I know Portuguese boys and men with Spina Bifida want more information about sexual matters, about medication, about possible sexual dysfunctions, about fertility… about everything.

As far as I know and, thinking optimistically, there are no more than four or five moms with Spina Bifida in Portugal. As for fathers with Spina Bifida, it does not surprise me at all to not find anyone to play this important role. Speaking generally, perhaps males are a bit too anxious about themselves and about relationships. They want the whole world in seconds, the girls in seconds too, sometimes using them in seconds. Sometimes, they do not do this because they're bad persons - they do this because they don't see a future living with someone they really love and care about.

Joao Coelho

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