http://www.one.org Dixie Peach: We're Not The Enemy

Cooler than the other side of the pillow.

Saturday, January 06, 2007

We're Not The Enemy

There's been a lot in the news lately about the family who has treated their profoundly disabled daughter with estrogen to stunt her growth and had her uterus and breasts removed in order to better manage her care. The treatment is referred to by them as the Ashley Treatment.

I'll admit that when I first heard of this treatment it struck me as being more than just unorthodox but downright drastic. Still I wanted to put aside my knee jerk reaction and think about what is really going on here.

I care for a fully grown adult quadriplegic. My husband is over 6'3" tall and he weighs somewhere between 150 and 160 pounds. If you don't think that caring for someone who's that tall and weighs that much is physically demanding then you come lift him for a while. I know first hand what it's like to heft passive weight all day, be on constant guard for pressure sores, be housebound because I cannot put my husband in his wheelchair on my own and a lift won't work with his particular chair. I know what it's like to have my back go out and my knees shredded because of the passive weight I have to lift and turn many times throughout the day. I also know what it's like to do this every single day, week in and week out, year in and year out.

I'm not going to go into the pros of the Ashley Treatment - you can go to their blog and read them yourself. And there are plenty of outraged people on their own blogs who are expressing their dismay at this treatment. I leave it up to each individual to form his or her own opinion but I still wanted to say a few things about this topic.

I found it troubling that Ashley's parents on their blog have had to repeatedly state that their reasoning behind the treatment wasn't to make their jobs as a caregiver easier and I thought "Well, what's wrong with a caregiver's life being made easier? Why is it somehow shameful for a caregiver wanting their job to be as easy and efficient as possible?". Ease and efficiency in caregiving isn't so we caregivers can be bothered as little as possible. It isn't so we have more time to shop and watch Oprah. Ease and efficiency means we're able to do what we do without punishing our own bodies. It means we can do what we do without burning out mentally and physically so quickly. It means we can worry a little less because when things go easier and more smoothly it tends to assist us in making sure the person we care for is happier and healthier. Getting a disabled person's environment changed makes them happier. Being able to more easily handle the body of a disabled person helps keep them healthier. Caregivers having it a little easier translates to us being able to give better care. It really is that simple. I absolutely believe that caring for Ashley will be made easier for her caregivers because Ashley will be a smaller, more manageable size. Lifting her will be less dangerous - immobile people have fragile bones and joints that can be easily damaged during lifts. Turning her, which is all-important for preventing life-threatening pressure sores, will be easier. Keeping her from menstruating lessens moisture against her skin, another major cause of pressure sores. Getting Ashley out into the world in a more convenient manner will be good for both Ashley and her caregivers because being housebound is a major component in caregiver burnout.

Some of the posts and comments on the blogs I read had feminists standing up for Ashley as a female but I read nothing about standing up for female caregivers. Most caregivers are female. Where's was their outrage at how female caregivers aren't respected and honored for what they do? Where is their effort to give caregivers the support they need?

There was mention in blogs that Ashley's parents have misdirected their focus and instead of coming up with a treatment that alters Ashley's body they should have been trying to get the system to change so that they could get the assistance they would need to care for Ashley in a fully-grown adult body. I view it as Ashley's parents understand the reality of what they're facing when they go against the system. They understand that the government doesn't want to spend any more money on helping the disabled and those that care for the disabled, insurance companies sure as hell don't want to spend money and the disabled and their families are pathetically weak against them. Instead of beating their heads against the system, they went around it and found a way to manage their child's care in a way that will keep her healthier and themselves able to personally care for her longer. A longtime caregiver will tell you that when you don't find a solution to your problem one way, you'll find it in another and sometimes you have to simply go with what works.

This blog contains a paragraph that made me immediately see that there are many who have opinions on this matter but a real lacking of understanding of the reality.

They did mention that it would be uncomfortable for the daughter to have large breasts, as she can’t be strapped in her chair that easily, and that it would be much less likely that she would have bed sores–but one would think (don’t know for *sure*) that after all these years, the wheel chair designers would have thought of something to help make it more comfortable for big breasted women to be strapped into their chairs. If they haven’t come up with something yet, I would be interested in *knowing* if there is any movement/petition/etc that I can hook up with to help make that happen.

I know the writer is making this statement with the best intentions but I honestly had to laugh when I read it. Yes, there may very well may be a way to strap in a large breasted woman in her wheelchair but can you guarantee that you could afford such a thing? Don't count on insurance paying for it. And don't get the idea that a strap couldn't possibly cost that much. Specialized equipment for the handicapped is a limited market and everything costs a lot. And I'll beg your pardon if I snicker at the idea of a movement or petition that will force a wheelchair manufacturer into making such a modification. If it's not going to make them money and there's a very small demand, don't count on it happening.

There's outrage out there about the treatment of this little girl and I respect differing opinions but I will also ask that it go beyond the expression of outrage. If you're outraged, ask yourself what you're doing to help prevent the need of such a treatment. Have you ever offered to help with a handicapped person so the caregiver can get a break or at least perform their duties in an easier manner? Have you ever asked your legislator to consider raising the funding for aid to the handicapped and the equipment they need for their care? Have you ever insisted that caregivers be screened so that known sex offenders aren't able to care for disabled people who can easily be raped or abused? Have you donated your money to assist a family with a disabled member in purchasing equipment they need but can't possibly afford? Have you committed yourself to taking over the care of someone if their normal caregiver were ever unable to continue their care?

Caregivers don't want pity or sympathy but they do need respect and the acknowledgment that they know far better than any outsider in regards what their disabled family member needs. We caregivers understand that those we care for are more than just bodies and have no need to be reminded of that fact. The people we care for are our spouses and children and siblings and we have dedicated our lives to them.

Labels: ,

12Comments:

Blogger sari said...

Dixie,

I'm glad you posted this. I read the article in my paper about Ashley the other day and haven't been able to stop thinking about her.

I can only say that as a person who has been supremely lucky enough to have two healthy children, I don't know what it's like. I don't know how it is to have a child to care for that is going to require care every minute of the day for the rest of her life. I don't know how I'd be able to do it.

I can't offer any judgement, as I've not been in their shoes. I can't say their choice makes me feel good, but it's not my choice, is it?

2:32 AM  
Blogger Sheila said...

I have been all over with my thoughts and opinions on the Ashley Treatment.

I had immediately reacted negitively towards all this, thinking, "Well, my boyfriend probably won't be able to use his legs again... should we cut those off to make it easier for me? Hell no."

Yet, then I considered having a mentally disabled person, which (in this case) is unlikely to progress any further. I sort of understood what the parents were attempting to do then.

But, the medical world is making leaps and bounds all over the place with all sorts of (what we had known to be) permanent disabilities. Who is to say that in Ashley's lifetime that something could be done to help her progress?

I'm very up in the air about this. I cannot say I am for or against the Ashley Treatment. I've been arguing both sides in my head since I heard about this two days ago.

Thanks for letting me vent. Heck, I think I'll copy and paste this over at my blog. ;)

3:12 AM  
Anonymous titankt said...

You've made your points very eloquently, Dixie. I read this story the other day, too, and I was more in favor of it than probably a lot of people are. I don't care for anyone disabled, but I guess in the back of my mind, I was thinking of the things you mentioned. If it's easier for her parents to take care of her, how can that be a bad thing? Wouldn't it be worse for all concerned if she got so big they couldn't take care of her anymore and had to send her to some facility?

I thought about how we have to deal with this kind of thing in society because in the not so distant past, people with disabilities like this simply didn't live. So, yes, we have to deal with the ethical dilemmas of our advancements, but personally, I'd rather deal with ethical dilemmas than deal with the death of a loved one who died simply because we couldn't take care of them.

4:25 PM  
Anonymous Connie said...

Dear Dixie,

I just discovered your blog and initial indications suggest that I've made quite the find! I look forward to future visits.

In the meantime, it occurred to me that if you haven't already, you might enjoy joining us and participating in the Disability Blog Carnival.
The deadline for the next carnival is tomorrow but submitting a post is easy, so you still have time! Here is the link: http://blogcarnival.com/bc/cprof_546.html

Steve and I live on the Planet of the Blind. We hosted the Disability Carnival #5. Come visit us there too! www.planet-of-the-blind.com

See you soon!

~ Connie

9:16 PM  
Blogger Hilda said...

Fantastic post Dixie. I'll admit I've read very little about this case because it's so heartbreaking. I completely understand what you're saying and I agree. Ultimately the admitedly drastic steps that have been taken will help her caregivers give her care.

My prayers tonight will be with all of them - and of course with you and B.

11:54 PM  
Blogger Katya said...

I haven't decided what I think about this case -- I'm glad you posted about it because as usual, you gave me something to think about.

12:34 AM  
Anonymous Marsha said...

This is such a complicated issue. On the one hand I feel that if the parents and doctor feel this is appropriate, who am I to question that decision? On the other hand I read in the news about caregivers and doctors who make horrid decisions for children, elderly and disabled people everyday, and I think I should be paying attention. Then, I read your post and I realize that paying attention isn't reading a story in the news and making a judgement, deciding from the sidelines what is ok and what isn't. If I am concerned about the quality of care of a disabled person or an elderly person or a child, I need to be a part of the solution and not make sideline judgements based on impressions and instincts.

Well said Dixie. I also like the part where you mentioned that feminism doesn't seem to take into account the rights and needs of female caregivers. I agree that feminism does not seem to spend a lot of time and energy worrying about the needs of women who have decided to pursue traditional female roles in society.

You have given me a lot to think about and stated it all very eloquently!

1:21 AM  
Blogger Miz said...

When I came to the truth that I couldn't take care of my Mother anymore I felt like such a failure. I hated seeing her in that facility. Ashleys parents are not goint to be young forever, there will be a time that they can't lift her even in a dimunitive state. I hope they get more help from insurance companies or the state than I did.

You do the best you can, you make the decisions that are right for you and your loved one and to hell with what anyone else says.

7:32 AM  
Blogger Carol said...

I thought this was just local news (as far as I recall, Ashley lives in Seattle), but guess not. My heart goes out to ALL caregivers!

carol

7:53 AM  
Blogger The Lone Beader said...

Thanks you for making more of us aware of this.

5:17 PM  
Blogger purplepassion said...

What works in one house may not work for another. Life is not a "one size fits all" event. It is different for everyone and each much make their choices and bear the consequences. Although at face value it sounds like a terrible thing to do to a person, I am sure that the parents aren't taking this decision lightly and it is only because another terrible thing has already happened to her, that it was even considered. I will support them through prayer in their decision.
Thanks for bringing this up.

9:21 PM  
Anonymous Deidre said...

Great post. Like you I was first astounded and then sympathetic to the story of Ashley. I cannot imagine what that family has gone through and the flurry of media scrutiny can't be making things any easier.

11:51 PM  

Post a Comment

<< Home