Ashley is Much More than a "Pillow Angel"

Every so often, a story breaks in the press that commands both the world's attention, and its prompt response. Such is the case with the story that broke this week about Ashley, the nine-year-old girl with special needs whose parents chose to have surgery to stunt her growth. Like many tough-life stories about children and parenting, this one tugs at our heart strings, while seemingly dividing us into solid camps of for or against the actions of Ashley's parents.

But there is much gray area that remains to discuss.

While this story has been played out in the press as an ethics issue, it's so much more. Ashley's story represents a human-rights struggle of grave importance, one with the potential to generate invaluable discussions about the never-ending demands of special needs parenting. Regardless of where you stand on the issue of right and wrong, the issue of disability raised by this one story (and there are many that go untold) deserves more thorough discussion.

My hope is that the media, as well as all those so quick to judge the actions of Ashley's parents, will instead take a deep breath, then add their thoughtful, passionate voices to increasingly balanced discussions that will help us create real change for this population, and their families.

If there is one point that this story has driven home, it is that for all of our apparent gains, when it comes to special needs, we are still in the dark ages.

There is no clear-cut, simplistic response to this story, and those trying to make it into one only add more fuel to the story's confusion and public outrage. That will do little to serve the best interests of Ashley, or that of others facing similar struggles. This is ultimately a story about a young girl's life, and the right to be part of what happens to her.

Briefly, here are some of the most pressing issues that I believe this story demands we discuss more fully.

First, while ethics is an important part of this complex discussion, it should not be the defining one (nor the primary topic/guest on talk shows). We need to include the voices of those who live with the day-to-day demands that this story brings to light. We should also include individuals who are living with a disability so we can make more educated decisions. This topic deserves that kind of coverage.

The reach of special needs is huge; 54 million Americans, and more than 600 million people worldwide, have disabilities. Special needs reaches across all socio-economic and cultural borders. We must stop ignoring this timely discussion and instead, do a better job of addressing and resolving the complex issues it creates. We need to reduce the number of images involving self-pity and self-deprecation.

We need to include the achievements of those with special needs in our history books and classroom discussions.

Also, we cannot continue to ignore the lack of adequate resources, services and respite care provided to the families who care for their children at home. Many families are breaking under the weight of their demands. We cannot continue to pretend that their struggles don't impact us. Special needs can happen to anyone at anytime, thrusting once typical families into unchartered territory for which they, and society, are ill prepared to handle. That's a sobering thought.

There is no clear-cut, definitive road map for the challenging journey of special needs parenting. It often does take a village...and the village, and our nation, need to step up.

I parented a child with cerebral palsy for nearly thirteen years. Eric had limited speech and motor skills and was fed through a g-tube, just like Ashley. I know about the issues raised by impending puberty and the demands faced by lifting your child every day. My back still bears the results of that tough responsibility, four years after my son's death.

Still, my husband and I agree that we could never had made a decision to intervene in our child's development in a way as dramatic as that chosen by Ashley's parents. We were always too busy focusing on maximizing our child's potential, not on changing the essence of who he was as a human being. Our choices, while rarely easy, focused on what would best serve our son's wishes, even as we fantasized about tropical vacations far away...

While there were no firm promises early on about what Eric's future development and life would become, other than dismal, we never allowed disability to define our child's value. It took years for the results of some of our commitment to be fully recognized, but ultimately we were rewarded for our steadfast parenting focus.

It took lots of time, patience and hard work. The work was at times exhausting, but when our son achieved even the smallest, most unexpected success, the rewards were exhilirating.

Like many children fed through a g-tube and lacking in mobility, we knew that our son would probably never have reached the height and weight of other typically developing children, making the weight issue a bit of a mute point for us. Perhaps that would have been the case for Ashley, too.

The fact is that the future of many children with special needs may still be up for grabs, and the outcomes may be determined by the choices that we as parents and professionals make every day to help them thrive and grow and lead increasingly productive, fulfilling and independent lives. Our decisions can last a lifetime.

Should we have the right to make decisions that cut a child's full potential short so early in their lives, or at all?

Today, many kids with special needs are still written off far too early in their development. On the flip side, I've met many others given every opportunity to thrive. The difference can be remarkable. All the successful individuals with special needs that I have interviewed during the past fifteen years credited a parent's love and positive choices for their 'unexpected' life success-- and for believing in them when all around them saw only a 'disabled" child.

Brighter futures begin with greater awareness of a person's intrinsic value, lots of love, valuable resources and services, pit-bull parental advocacy, and a mindset focused on what's possible for that child, regardless of a disability. Not every child will achieve the dream of full independence or reach those all-important, age-appropriate milestones, but don't they deserve the chance to try, especially while they are still so young?

We need to provide families and society with greater examples of those with special needs who are productive, independent, contributing citizens. We need to redefine family, and provide these families with the critical support they need to handle their challenging roles well. The lack of positive parenting examples for families helps create a sense of hopelessness that too often results in limited, self-fulfilling prophecies for their children.

I don't always agree with the decisions made by parents, including this one, but I do respect their right to seek out decisions they believe are in the best interests of their children. What disturbs me greatly here is the complexity of a decision that raises serious issues about the value and rights of those with special needs. It reminds me of the experiments that were conducted in secret on children with cerebral palsy in institutions years ago.

They, too, had no voice. We cannot allow the ignorance of the past to define the futures of our children. We have traveled too far.

I can't help but ask if the physicans in this case gave the family an opportunity to talk with parents of children with similar challenges who were handling their child's needs without such drastic intervention? I am concerned by some of the arguments attributed to the professionals involved stating that the parents' actions did not hurt their child. Today, too many professionals still foster stereotypes about children with special needs, while armed with dismal statistics and powerful, stinging words that may take away the kind of hope families need to help them create better futures for their children.

There is still a critical need for the press and public to stop using language that fosters the view of this population as less valued. That includes the use of outdated terminology that reinforces stereotypes. Words like severely disabled, handicapped, crippled, 'suffering from', brain dead and 'confined to a wheelchair' do nothing to raise the image of the value of those with disabilities. The fact is that we can still tell the stories accurately and fairly by using more up-to-date terminology.

One of my biggest arguments with the coverage of this story thus far, is that Ashley's name is often not even mentioned until far into the print or broadcast coverage. We need to focus on the fact that this girl is a human being first and foremost, not just a nameless child with a disability that we can easily disregard. That means using people-first language, always.

While there are many things about this story that concern me, I believe that we have been given an important, long-overdue opportunity as a society to address this population with the respect it deserves.

Ashley deserves at least that much from us, as do all the other children counting on us to best serve their interests and needs, not only our own. After reading their blog, I do believe that Ashley's parents made their decisions out of deep love for their child. But I can't help but wonder if those choices might have been made differently with access to more positive resources, additional dynamic parenting examples, further discussion about Ashley's future potential, and with the benefit of time. We will never know.

We cannot undo what has been done to Ashley, but we can and must remember one important fact: Ashley is much more than just a pillow angel. She is a living, breathing human being.

As a society, how long will we continue to ignore or gloss over that fact?

JudyWinter.com
Author:
Breakthrough Parenting for Children with Special Needs: Raising the Bar of Expectations

To learn more about Ashley, this story, and what is now called "The Ashley Treatment" visit the parents' blog: http://ashleytreatment.spaces.live.com/