Comments on Life With My Special Ks: Quality of Life

Tag! You're it! http://unsuppressedjess.blogs...

2012-01-16T09:31:44.982-07:00

Tag! You're it! http://unsuppressedjess.blogspot.com/2012/01/tag.html

Speaking as a person who is not a parent but who m...

2012-01-15T21:21:13.336-07:00

Speaking as a person who is not a parent but who myself has multiple disabilities (deaf, attention deficit disorder, and others), I find it distressing that doctors are so often entrusted to judge the "quality" of lives they know so little about.

You see something similar with deaf children where doctors who know NOTHING about linguistic development try to tell parents that using sign language will harm their child's ability to learn English or learn to speak (NOT TRUE AT ALL!! Sign language will in fact HELP them learn other language skills and will give them one more way to communicate--as a deaf adult I use many different ways to communicate in different situations--either speaking or writing in English or in Spanish, or using American Sign Language ... I use WHATEVER WORKS. And if you're deaf, you need MORE communication tools in your toolkit, NEVER FEWER. I use so many approaches to communication because there is NO SUCH THING as a one size fits all situations communication tool. But doctors who understand NOTHING about the real lives and the real communication challenges of deaf adults and children presume to think they know enough to tell parents how to raise their deaf child!

I know a woman on-line who is autistic and has various other additional disabilities who has written about the way people just assume she has no "quality of life" -- but in fact she very much values the richness of her life. Read what Amanda Baggs says about the quality of life at http://www.myspecialks.com/2012/01/quality-of-life.html, Then go explore her excellent blog at

ballastexistenz.wordpress.com

An organization "Not Dead Yet," run by adults with disabilities is campaigning to educate medical personnel and the general public that, no, a disability does not diminish the ability to appreciate life and, YES, the lives of people with disabilities ARE worth living. (Some people with disabilities have had others tell them "I'd rather be dead than disabled like you"!! No one should have to hear something like that.) They have blogged on the Amelia Rivera situation at
http://notdeadyetnewscommentary.blogspot.com/

I've also blogged on the Amelia Rivera situation and signed the petition. Good luck, all, with the struggle--not just to save Amelia Rivera but to find a way to educate doctors that ONLY PEOPLE WITH DISABILITIES OURSELVES are qualified to judge our actual quality of life--NOT DOCTORS!! And, to find a way to educate doctors to consult more closely with people with disabilities OURSELVES, as well as with the people who love us, instead of assuming that they can judge a person's quality of life (or value of life!) just by looking at a diagnostic label. We need systematic change in the way that medical personnel and people of the general public understand what it really means to live life with disabilities, or to live life as parents or other family members of people with disabilities.

I just don't even have words! Praying! Hebrews...

2012-01-14T23:33:45.971-07:00

I just don't even have words!
Praying!
Hebrews 6:17-20 Wherein God, willing more abundantly to shew unto the heirs of promise the immutability of his counsel, confirmed it by an oath: That by two immutable things, in which it was impossible for God to lie, we might have a strong consolation, who have fled for refuge to lay hold upon the hope set before us: Which hope we have as an anchor of the soul, both sure and stedfast, and which entereth into that within the veil; Whither the forerunner is for us entered, even Jesus, made an high priest for ever after the order of Melchisedec.
Prayer Bears
My email address

Renee I signed the petition as well, so hard to th...

2012-01-14T21:10:38.054-07:00

Renee I signed the petition as well, so hard to think that in the USA and in 2012 this can happen.

Also do not know if you had heard that Aaron Shust wife delivered a baby boy at 37 weeks in NICU diagnosed with Down Syndrome and AV defect waiting on surgery.

I just cannot believe this. Really I cannot believ...

2012-01-14T21:01:12.926-07:00

I just cannot believe this. Really I cannot believe in this day and age and in THIS COUNTRY we are facing this type of discrimination towards our children and this child is OUR CHILD. Thank you dear friend for your beautiful post and for always staying on top of issues that affect our beautiful children. This actually affects the future of humanity.

I signed the petition, commented on the facebook p...

2012-01-14T20:12:53.524-07:00

I signed the petition, commented on the facebook page, and emailed every major media outlet (locally and nationally).

I also made a post on my blog earlier. This is so ...

2012-01-14T18:11:57.430-07:00

I also made a post on my blog earlier. This is so disturbing. I cannot believe that in the year 2012 in the United States people still have the logic that SN's is something to fear. How can this doctor who is in the business of SAVING lives think this is ok? Who is he to think this child's life is not worth living? I am so upset by this, it has bothered me everyday since I saw the post. If this were my child I think I would have beaten the man. My thoughts and prayers to the family and sweet Amelia.

I posted about this too; it brought me to absolute...

2012-01-14T17:28:46.565-07:00

I posted about this too; it brought me to absolute tears. You've got me thinking, Renee...about Kellsey and how she was deemed "worthless" by the society she was born to. We are NO BETTER right now than all of those former Soviet bloc countries. NO BETTER. Not if we don't stand up for our citizens with special needs and say "they are people too".

this is the craziest thing I have ever heard. make...

2012-01-14T16:32:46.447-07:00

this is the craziest thing I have ever heard. makes me want to scream. We donated my brothers organs 15 years ago and it would kill me if they said that precious blessing would not be eligble

I have stormed the page and signed the petition. ...

2012-01-14T15:38:49.249-07:00

I have stormed the page and signed the petition. I. Am. Disgusted. If you look in the photos section of their FB page I added a collage of other kids with this syndrome. ALL who should be as valued as any doctor at that hospital.

http://mylittlewarriorprincess.blogspot.com/

That is horrible! I am absolutely disgusted at the...

2012-01-14T13:59:58.348-07:00

That is horrible! I am absolutely disgusted at the treatment this family is getting! I signed not only the petition but also went to the fb page. I don't know if I would want those dr's anywhere near my child after that but if that is the only place to get the transplant done the quickest then I guess staying there is the only option! I hope things turn out good for them and that the dr is punished in some way!

beautiful and heartbreaking post. I too am comple...

2012-01-14T13:46:01.762-07:00

beautiful and heartbreaking post.

I too am completely disgusted by CHOP for this, as they treat my severely disabled son in their autism clinic.
What hypocrites!

Good for you for spreading the word too!

Just going to another hospital doesn't excuse ...

2012-01-14T13:12:37.083-07:00

Just going to another hospital doesn't excuse or dismiss the behavior of the doctor at CHoP. Trying to get into another hospital can also take a long time- it took us 6 months just get an initial appointment for my son in hospitals here for his special needs.

We as a society should not stand for this. We should not tolerate a meeting that devalues a child because of a disability- for any reason, and all the less in a meeting about life or death.

I just signed the petition! Makes me very sad that...

2012-01-14T13:09:40.097-07:00

I just signed the petition! Makes me very sad that our country can't offer better than this...

That is TERRIBLE! I pray a doctor steps up and hel...

2012-01-14T12:10:32.378-07:00

That is TERRIBLE! I pray a doctor steps up and helps them!!!

How horrid..

2012-01-14T12:08:56.420-07:00

How horrid..

Why doesn't the family just go to another hosp...

2012-01-14T11:32:46.182-07:00

Why doesn't the family just go to another hospital to get better care and a transplant ?? This is ridiculous to hold treatment based on one doctor's opinion!!!