PLEASE. Those of you that are so quick to judge the parents - and I’m looking at FRDE here - read this post and the website.
What do you suggest they do? Are you honestly suggesting they kill her now? Cut her arms and legs off? What? Come up withe a better solution.
They’ve been dealt a terrible hand by life. It does not matter what they did in the past. It’s too late to look back. They have to do something now. And upon extensive reading of their website - I read the whole thing, plus comments - I feel they are doing the very best they can.
My sister has Down Syndrome. From what I can gather of your posts, you think she should have been “culled”. You know what? She’s the happiest kid I’ve ever seen. I just talked to her on the phone the other day for her birthday (she just turned 8) and she was telling me all about her cake and her presents, and about her dog Hobo. She has an IQ in the 90s and she’s a joy to her family. Who the hell are you to say she should be dead??
The only thing that concerns me is what if something happens to the parents? What if they are killed in an accident, or if their daughter manages to outlive them? I didn’t notice a mention of other siblings or family caregivers. What would happen to this girl?
Yeah, I know. That was kind of my point. They knew when she was born that she had Down Syndrome… and if FRDE had his way she’d have been euthanized on the spot, despite the reality that she is only a little less than average in the IQ department, and way ABOVE AVERAGE in the caring, loving human being department.
and me too! What people like FRDE don’t realize is that the gross majority of kids and people with mental handicaps, are mildly affected. It’s just VERY hard to tell how severely someone will be affected by a particualr disabilty. If I had a quarter for every time I heard “the docs told us they’d be a vegetable” I’ d be a wealthy woman. Yes, there are severely affected kids…and profoundly affected kids, as well as extremely profoundly affected kids. But very few kids are very extremely profoundly affected (ie PVS) Most of those who ARE extremely profoundly affected were either in car accidents (coma) or have progressive disorders like that Lorenzo’s Oil disorder. There are some who are born that way, but overall PVS due to extremely profound MR is very rare.
They mention that the only other relatives are her grandmothers and that they’ve found it “impossible to find qualified, trustworthy, and affordable care providers” and that they "would never turn the care of Ashley over to strangers even if she had grown tall and heavy. In the extreme, even an Ashley at 300 pounds, would still be at home and we would figure out a way to take care of her.
" If something happened to the parents Ashley would un up in a nursing home of some kind and be dependent on strangers. There’s no alternative. Even if she has aunts/uncles or her parent have more children (which IMHO is a bad idea) is it fair to expect them to take over her care? Ashley goes to “school” which from the sounds of it only serves to give the parents a break. However I don’t the the fact that someone will be totally dependent on others is automatically grounds for euthanisia. Are there any jurisdictions where it would even be legal for Ashley? What about the Netherlands?
your liability - and you pay for her - in cash and time
While you are at it your sister and b-i-l might enjoy a holiday from looking after her (that happens) you could take a turn at the sharp end.
Don’t trust the IQ tests that much, it is easy to bump them up with practice.
I look forward to the concept of you, in 30 years time, acting as minder to a very happy but totally naive individual that is totally incapable of taking care of herself.
Yeah, well, I’m not convinced that you have a mental handicap.
Your spelling has deteriorated since your original post (but round here that is normally due to alcohol or ‘excited typing’ - as one gets in the groove and forgets to proof read).
If I were you, I would not self identify with retards, and just in case you have not noticed, those here with self proclaimed genetic defects tend to have the harshest and most brutal views.
What the hell are you on about? Did you even read or understand my post? MY SISTER has Down Syndrome. Not “my sister has a child with Down Syndrome”. MY SISTER is 8 years old and is obviously not married, so I have no brother in law. My father and his wife live many hundreds of miles from here and have 4 other children in that same general age range (I was 21 when he got remarried and started his new family–my 5 brothers and sisters are all in the same general age range as my own son, ranging from 6 to 13) and they would most likely be the ones to help care for her if she needed it. I do not foresee a time when anyone would suggest that I take care of her–I’m just too far removed both physically and otherwise from that family to be the appropriate choice. I grew up (after about age 2) seeing my dad only once a year and we lived 2500 miles apart; they’re all much closer connected to my father’s wife’s family, who all live in that area, for example. I still only see them once a year if that, whereas they see her family weekly. If care were to fall to hands outside their immediate family, it would go to her extended family long before it tracked back to me.
As for my sister, she is extremely high functioning. She helps with the cooking and cleaning, she does her schoolwork, she can ride a horse… There are plenty of Down Syndrome people who live on their own and have productive lives. I have no doubt she will be one of them, because her doctors marvel at how very nearly off-the-charts she is. And even if she isn’t, that is none of your concern. And there are plenty of families who have adult Down Syndrome children living with them who are VERY HAPPY. It’s not like it’s some sort of death sentence. Sure, some families may consider it a burden, but it is far from a given that they will feel that way.
I am wondering at what point does a family decide that a “pillow angels” disabled life is not worth it anymore, the feeding tubes and the 24/7 physical care requirements.
If they decided to thow in the towel and remove the feeding tube down the road would they be allowed to do it? I mean, Schiavo allegedly said she wouldnt want to be in a PVS, so years after her disability her tube was finally pulled. But she was once a normal fully functioning adult who had the right to make that wish. And now living wills are the tool that are used to end an undignified state of being. ( I recall the arguments in favor of schiavos death, she is a shell, no longer human, there is no dignity to her status, etc etc )
What of pillow angels, they never had the ability to state their wishes regarding their care and life, so are they exempt from the same so called right of a dignified death to end a perceived undignified life, like Schiavo lived in her PVS? Short of Schiavoing piillow angels I think their families should have access to the Ashley treatment.
BTW I thought it a damn shame the way Schiavo’s life was ended.
Yep…the politicizing of that case was absolutely disgusting, and the protests were ridiculous. I wonder if the same thing is going to happen here? (I think I’ve already seen news reports of a protest in one city.)
FRDE, I guess I’m just not understanding how you can view a person with Down’s Syndrome as the same type of “burden” as a child like Ashley.
I am EXTREMELY pissed at this. :mad: I actually DO have a slightly lower then average IQ, as well as a disreprency between my nonverbal and verbal IQs.
An IQ in the 90’s is slightly lower then normal, yeah…but it’s not MR. MR starts at 70-75. While I do **not ** have MR, I do have a learning disablity…and not one of those LDs that magicly appear your senoir year of high school. A lot of LD kids do experiance developmental delays, (eg social to give a common example)
An IQ is just a number. There are geniuses who are dumbasses. (by dumbass, I mean the type of person who’s like “ummmm…who’s President Bush again?”…Apathetic slackers in other words.)
Also, MR doesn’t have anything to do with whether or not someone will be independant or not. There are low IQ people who are living pretty much indepenantly, despite the fact that they didn’t cotton to formal education
However, if MR and developmental delay is present at the same time, THEN it’s an area of concern. MR doesn’t always equate with developmental delay. Yes, laymen often use the terms as synonomous, but it’s a lot more complicated. You can be MR without DD, or DD without MR!
And? I can’t spell too well. Many people can’t spell too well. So fucking what? At least I can articualte myself well.
I don’t self idenitfy with “retards”…I self identify with people with disablities, which can and does include people with developmental issues such as LD or Asperger’s Syndrome. I don’t really find too much in common with MR folks since I consider myself an intellectucal…hell…sometimes I don’t really find too much in common with a typical IQ type.(Like I have no idear why things like Big Mouth Billy Bass, Precious Moments and Thomas Kinkiad are such big sellers) I have noticed that a lot of people with genetic issues around here, tend to be self loathing…but maybe it’s b/c of the way they were taught to look down on themselves. Darwinism tends to make people think " Keep them damn minorities down boys. Survival of the fittest"…But how do we know that those genetic defects don’t in of themselves produce a lot of amazing advantages?
I know…and some of the Dis Rights bloggers out there think that Ashely’s parents are more then a little not exactly emotionally with it, when it comes to their child! and these are bloggers who actually DEAL with severe disablity…Not just mild CPers being horrified.