Monday, August 12, 2013

Don't Hate The Cure, Hate the Haters!

I am so sick of people who look for "cures" or better treatments or a change in their medical treatment being looked at as vile creatures that should be relegated to the depths of all of Dante's realms for eternity.

People with disabilities are already stigmatized and often cut off from general society because of antiquated assumptions and prejudiced thought. Why must people with disabilities have to endure hateful accusations from people within their own communities???

For those of you who may be unfamiliar with my family here’s a tiny recap. My daughter is now 15 years old. She has cerebral palsy which affects all four limbs that was caused by an injury at birth aka doctor’s error. She is non-verbal, non-ambulatory and needs full assistance in every aspect of life. She is a beautiful, intelligent, loving, funny girl who is disabled. I had her when I was barely 20 years old and raised her on my own. It was hard. I mean, really tough. Forget the psychological price a parent pays, the physical bill is enough to make some people dine and ditch! I can’t imagine myself without my angel face but I would be lying if I said there weren’t days where I felt like I just couldn’t do it anymore.

I would also be lying if I said I don’t still wish there was a cure or miracle waiting out there for us. If I came across some medical procedure, medication, doctor, wand, fairy dust or crystal ball that would take the CP right out of her without the risk of death or something like that, I wouldn’t even take a second breath before I screamed out, “HELL YES!!” Why do other parents – especially those of children with autism I have come to discover – judge me, and others like me, for that? Why do people in the disability community insist on further alienating individuals in their community who WANT a change? One paraplegic may be fine with never walking again while another searches for the scientific breakthrough that can give her her mobility back again. Is the former a “better person” than the latter because she’s “come to terms” with her disability, “accepted what’s been dealt”? Is the latter “better” because she’s a “fighter” and “isn’t giving up”? Why does one have to be better than the other? Each one of you reading this makes decisions for your own life that you feel is in your best interest. Each one of you reading this makes decisions for your own life that you feel is in your best interest. I’m 100% sure that none of you like it when someone offers their thoughts on which direction you should go in, especially when you don’t even ask!

Those parents who say things like, “I would never cure my child because then they wouldn’t be who they are”. Really? Every circumstance in everyone’s life makes us who we are. The family I was born into, the way my parents spoke to me, the school I went to as a kid, the friends I made in high school, the jobs I held in my 20’s…all those things make me into who I am. And I’m still evolving. Who I am in 5 years will be different than who I am at this very instant. So yes, if a child is cured or healed of their illness/disease/disability, they WILL be a different child. Anything that happens TO him, FOR him, WITH him, BY him will change him, for better or worse, whether he has a disability or not

How can anyone automatically assume that they know beyond a shadow of a doubt what their kids’ desires are when that kid can’t vocalize them? And who are you to judge me and others like me for wanting our kids to be able to have a different life? Do these people not think that if my daughter was given the choice, she would choose to WALK? Do they not think that she would love to TALK, to HAVE FRIENDS, SLEEPOVERS and GIGGLE FESTS? Do they not think that she would choose to have an easier road so that putting on a shirt is not a struggle; so that eating is a matter of preference rather than a chore of organizing her lips, tongue and cheeks in a manner that would allow her to bite, chew and swallow without spilling, coughing or choking??

Yes, if she were a “normal” kid in a “normal” school, she would be different. Maybe she would have an attitude – teenagers often do. Maybe she would be a bookworm. Maybe she would be a tomboy or a princess. Who the hells knows? I wish I did. Don’t villainize me for wanting the best for my child. Isn’t that what a parent is supposed to want?


  1. This is an intriguing perspective. I find that many people who are "cure" averse are autistics or people who are deaf. I only know a handful of people with CP so I don't really know their perspective. Do you think it is the parents who want the "cure" more than the individuals themselves? For instance... a person who was born deaf and the parents consider giving them cochlear...essentially "curing" their hearing. What would you say to those who love their opinion about their own lives?

    1. I think Tim's question is a big one to ask ... at what point does a parent's desire supercede their child's?

  2. I know that there are many people who live with disabilities and live full lives and there are people without disabilities who don’t. What I’m getting at in this post is that I have personally seen people with disabilities (or their parents) who would not choose to be different, judge individuals who would choose it. As a parent advocate, I am accused of wanting these changes in my daughter to make my own personal life easier when this could not be farther from the truth. While my daughter has a wonderful life, there are aspects to it that still hurt my heart (isolation from relatives; fear from the general public) that I wish I could change for HER.
    There is a conversation going on at my facebook page regarding another person who does have CP and his choice that he would NOT change his life, if given that option.
    My post is about not looking down on others who have a different viewpoint. To those who would not choose to be different: great! Good for you! I'm sincerely happy that you feel that way about your personal life. But why should I (and others who think like me) be castrated or accused of loving our children (or our lives) less than them?

    A community who is sadly still fighting for equality in today's society should not be focused on further stigmatizing a targeted segment simply based on them having a different opinion. An opinion that at the end of the day, has no effect whatsoever on their own life!

  3. Very important discussion. I have also made a comment on your Google+ page. Thanks.

  4. Well, perhaps the hottest of all my hot buttons!!! I frankly don't give a rat's ass if some disabled people and parents of disabled people scorn long as they keep it to themselves.
    My Adam, like your daughter, is severely disabled and the reality is that a drowning is similar in manifestation to CP...all the areas you described and we have cared for him for 15 years and probably will for many more.
    I once, recently, batted a PhD who is a para and remarked that is I wished Adam would be cured I really meant that I wished he did not exist...choice words, non-repeatable, did I have for him.
    My line was: tense every single muscle in your body and hold it for 2 minutes....get how that feels; now try it for 15 years and be unable to get any relief from present allopathic medicine. I wish for a cure from spasticity and contracture. Not because it would make my life easier, but it would make him more comfortable in his body. I love him as he is and always will because it is a worthy life. I would do anything for a "cure"; stem cells of the future, medical marijuana which holds great promise for spasticity, whatever.
    Sorry, the disabled to scorn cure are in all the realms of disbility; they poo-poo stem cells, frown on exoskeletons, dismiss the role of endo cannabinoids, etc. ABA is inhumane, etc. The social model of disability is the undoing of a movement of research, of cure, of easier life.
    You only seek cure/respite if you see a problem. If there is no perceived problem, then don't seek cure or betterment, but never disparage those who search. Cure is much more of an issue for the severely disabled who cannot communicate.
    I could go on and on; suffice it to say, Melissa, you are on target with your post and I would not give a hoot who you anger.

  5. Phil, that's the impression I also get from those who say they would never change their child (emphasis on the "never" with a snooty upturn of the nose, if you catch my drift)...that I am wanting this because my daughter is not "good enough" the way she is or because I want MY life to be easier...that they are better parents because they deal with what needs to be dealt with and never think about the "what if's"...Someone commented on a link I posted in a FB group page that there's "nothing wrong with her daughter" who has a disability.
    That's exactly the judgement I'm pointing out! I never said there's anything wrong with being disabled. Nothing's wrong with my daughter. I just want to make life less complicated for her. Physically, cognitively, developmentally, all of the above areas or only one.
    Speaking of marijuana (of which I don't yet have an opinion on either way), have you seen the CNN report by Dr. Sanja Gupta? I didn't see the whole thing but he's saying he was wrong about his initial thoughts on it and feels it's legitimate medicine for certain patients. Here's a link in case you're interested:

  6. I did and wasn't surprised. Massachusetts has medical marijuana and research abroad show that CBD, the not psychoactive portion, has great promise for release of spasticity. Trying to grow an Israeli strain called Avidekel which is 18 CBD to 1 THC. Of course they have used since the 80's. Gupta scratched the surface of the medical potential.

  7. I think this is interesting and provoking. I've written about the opposite side of this -- the "cure pushers" - well-meaning folks who shove every new "cure" your way and ask when you'll try it with your kid - because I buy into every idiot's idea of what a cure is.

    As I stated on G+, I do think there's a distinction between wishing things were easier for your child, being willing to embrace a cure that would make their quality of life better, and "curing" a child SIMPLY because they have the diagnosis.

    I wouldn't want to cure my kids, in the traditional sense of the word - because they are amazing little men and I wouldn't want that to change. That said, if there were a way to keep y sweet Bobby but give him the ability to interact with his world on a fuller level, a way that wouldn't hurt him in any way, I would consider it. In the same way that I would with my youngest.

    Logan has life-threatening seizures, severe autism and apraxia of speech, and ataxic CP -- he's fought hard for every milestone he's made, but if we could take the lack of communication away, or if we could take the seizures away, I would be jumping on that. You watch him turn blue in the middle of a seizure, you give him CPR over and over again ... and then say that hoping for a cure of some sort is an evil thing.

    Here's the thing, though, and it's a slippery distinction of sorts -- at what point do you stop accepting your child for who they are versus hoping for their life to be easier?

    By the way, I also think one other thing applies here and it bothers me almost more than the conversation for/about cures, etc ... it's this whole "my opinion is the only one that matters" mentality. It's easy to do that, to think your opinion is the best one and only one that matters - but in the special needs community you find that it's taken to the extreme sometimes.

    What happened to supporting our fellow parents/caregivers and having an open mind as to the opinions offered by those who have actually lived with a diagnosis rather than tearing down another parent or person with a disability just because you don't agree. Here we are, as a community, dealing individually with the kind of stress and emotional craziness that screams out for support, and we tear each other down instead of supporting and encouraging them. It REALLY bothers me, and while it certainly isn't isolated to the special needs community, it seems to sometimes become more hurtful, more petty and cruel - to tear any parent down who is struggling to simply to the best for their child that they can.

    Alright - I wrote a book ... so I'll just conclude with "good post" and a thought-provoking one too.

  8. Thanks for your "book" Katrina =D
    You hit the nail on the head when you talked about an allowance for a difference of opinions. That's the thought that sparked my post in the first place. I have very often felt snubbed and looked down on by certain folks when I talk about wishing there was something I could do for my daughter other than treatment. I do know there are many people who have disabilities that would never change a thing about themselves; on the flip side there are many who would. Why do some assume one is "better" than the other?
    One thing, though, in answer to your question "at what point do you stop accepting your child for who they are versus hoping for their life to be easier?" I don't believe there is such a place. What I posit is a cure (meaning REAL cure, not false hope)that would take the CP right out of my daughter without any risk of death or injury. Do I personally believe that we should chase every "new" discovery that may or may not help and could serious bodily/emotional damage? No. But who am I to tell someone else that they can't make that decision for themselves? Just because a person decides to try something doesn't mean they don't "accept" themselves or their loved one. This is one of the assumptions made by those who would "never" change a thing - that I don't love my daughter the way she is, which is just not true!
    If a person has a child who is not good at science and they hire a tutor to help their child, isn't this parent "changing" their child by finding something to help him with a problem he is having?
    Does that parent not love their child as much as the one who lets their kid fail?

  9. People need to care more about each other. Part of that is letting everyone be who they need to be. Short of that, humanity will continue to flounder and be stagnant in its/our evolution.

    Ignore idiots.
    Live your life.
    Raise your kids the best you can, and ask your daughter this same question when she is older. In the end, her answer is the only one that matters.

  10. hi melissa. you very much remind me of my mother. for every doctor, cure or even witchcraft available she seeks it out and drag me along. i would often cry as a young child scared of different faces and hands that hold me. it was traumatizing. it came to a point that i think mom was doing this because she is ashamed of my disability. i only learned when i grew up she was preparing me for my future, wants me to be independent and be like every one else. for she wont be with me, to take care of me forever. dont listen to your detractors. do what you need to do to take care of your daughter. no good mother would want any harm to her child.


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