I’ve started the petition “Health Secretary: Stop asking families of disabled young people to discuss Do Not Resuscitate Directives.” and need your help to get it off the ground.
Will you take 30 seconds to sign it right now? Here’s the link:
Here’s why it’s important:
I have 2 daughters who are neurotypical – they are physically able and their intellectual function and social understanding are unimpaired. I also have a daughter who has multiple disabilities. She is a cheerful young woman with a great sense of humour, wonderful musical ability and everyone who works with her falls in love with her. She is a much loved and very valued member of our family. Because she lives in a residential care home, I attend an annual review to assess her progress and ascertain that her care plan remains appropriate. And every year I am asked (I’m told it’s a requirement of the local authority and the NHS) to discuss whether Do Not Resuscitate should be written on her medical notes. She is 30 years old, and although disabled, she is in very good health. She lacks the mental capacity to understand and take a decision about this matter herself. She has exactly the same sort of life expectancy as her non-disabled sisters. No one would ask them to consider refusing resuscitation. I find it offensive that society assumes that disabled young people have such poor quality of life that they should not be given proper care if they become ill. It is the ultimate disability discrimination, giving the message that if someone’s life is different and more limited than average, he or she is disposable. Please sign my petition to tell the government that disabled people’s lives are as valuable as non-disabled lives, and end this practice of requiring families to discuss Do Not Resuscitate directives.
You can sign my petition by clicking here. http://www.change.org/en-GB/petitions/the-government-stop-asking-families-of-disabled-young-people-to-discuss-do-not-resuscitate-directives
Thanks!
rosbayeswriting 
I definitely understand your concern around the DNR and completely agree that everyone’s life is of equal value. I’m wondering if there’s a “Do not ask me this question again for at least ___ years.” option, that you can make use of while attempting to get this petition leverage.
I don’t see it as discrimination. It’s an important medical necessity to make sure you feel the same year to year in case you’ve changed your mind. My mother’s doctor asks her that periodically. Maybe you are so close to the situation it’s extra sensitive to you, but it’s not just the disabled that are asked that question to begin with and then at regular intervals.
As kdub155 suggested: Tell them you do not want to be asked that question. I don’t know if it will work, it’s true they are required to by law so they may not be able to conceed. But, you won’t know until you tell them.
If you can; don’t look at it as discrimination against your daughter but a respect that they are looking out for her to make sure all medical decisions are up-to-date and clear to all.
Thank you for your comment, it’s good to see different viewpoints being discussed. My point here is that we’re talking about a young woman with an expected lifespan of at least another 40 or 50 years who is being treated differently from her non-disabled peers. That’s what makes it discrimination. If she were 60+ there might be different issues to consider, and her peers would probably be being asked to consider exactly the same issues. But this is a healthy young woman and that’s what makes it morally wrong in my view.
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