Refusing Medical Treatment

There was a great show on Talk of the Nation today on the right to refuse medical treatment based on the family that fled under a court order to provide chemo for their child with cancer. 

I have had both friends and family refuse medical treatments for various reasons, and others who have used every available option. Going through this with loved ones so many times, I have come to understand how nuanced and intensely personal these decisions are, and to respect the place that people come to for their own reasons. 

Parenting a child with complex needs makes these decisions so much more complicated to me than these other decisions. There all the disability rights issues, the moral and ethical issues, the quality of life issues there are also questions of her informed consent. The most important thing to me for any one facing these decisions is what matters to them. Yet how much can I rely on that with my child? Not so much, I think. Does that necessarily mean we do everything we can always, or would I do what I think I would want, or what? 

Right now, I do everything, always. It feels right; she loves life, we love her, that is enough. 

But there are the complex legal issues of refusing treatment for a child-- as a parent, we mostly can't refuse treatment. I could be in a bad situation if I refuse to go to the ER for another seizure and things go wrong. Or if I decide to try to take her off just one of her four seizure meds to bring her back to the world of the alert, without her doctor's consent? What is the role of the medical establishment and what is my role in parenting my child? I am not sure how I feel about that right now. But I appreciated the conversation today on NPR. 

Access, It's an attitude!

We took the family out to see Night at the Museum 2 at our favorite local theatre. Why is it our favorite? Accessibility of course. It has wheelchair seating in the first row and unlike a competing franchise, lots of chairs for companions or families. We can all sit together! And they have nice ramps at all the regular entrances. In fact, no stairs. A great separate restroom so we don't even have to jockey past all the regular stalls to get to the "big one" at the end. Even the snack area has low counters and is wide and easy to navigate. 

More importantly, the staff there are always a pleasure. They are helpful without being obtrusive or indulgent. They always greet all three of my children without singling any of them out. Most refreshing to me, this theatre employs a number of people with disabilities, so my children feel at home-- this place reflects our lived experience.  And my daughter who has a disability interacts with folks who are doing work that demands a great deal of interaction with the public. I believe this is part of the reason the whole staff there is so much more skilled than the public at large at interacting with our family. They have peers and colleagues with disabilities and varying abilities; interacting with us is a normal part of their lives.

Access is so much more than a ramp, it is an attitude of normalcy, an experience of being welcomed and fitting in. I am so glad to have places like this, and as my children experience more inclusion at school, I look forward to a future where most places are like this. Thank you again to the many generations before us who worked on ADA and IDEA.