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Issues: Battle for the Rattle

A soldier mom story of custody court, disability and mothering

November 23, 2011

By: Ella Callow & Kaney O’Neill

Kaney O’Neill usually speaks in softly measured tones. She is precise and careful with her words and always sounds a bit like the soldier she was in an earlier life. But when she talks about her son Dylan, her voice bubbles up and over the phone lines, warming happily. “I was always worried he would fall learning to walk, and I wouldn’t be able to help pick him back up,” she tells me, “but he actually learned to take his first steps holding onto the footrests of my wheelchair!”

Kaney O'Neil

She should be happy. It is a poignant moment, really, a moment that very nearly did not happen. She had to fight for it, like the soldier she was, and earn her current rank of mother in a way most of us never do.

This soft-spoken woman with quadriplegia literally spent the first year and a half of Dylan’s life fighting for him. In the course of that time she would be dissected in the national media, debased in public commentary, championed internationally and gagged (by court order) locally. At the end she was left with a hard fought treaty, a settlement, and a son. Though fighting was nothing new to O’Neill-she had already survived the military, hurricanes, painful rehab from a catastrophic fall- She would come to feel that it was all just a warm-up to her greatest battle of all.

O’Neill was born in Yakima, Washington in 1978, and raised in Illinois with forays here and there following her single mother’s climb up the corporate ladder. You imagine her, only daughter, the little sister to big brother Nick, looking then a miniature of how she looks now, like the quintessential Midwestern girl. O’Neill is blond, pretty, smiling, putting you in mind of a beauty queen. But when her brother Nick, 18 months her senior, chose a soldier’s life, she did too. Nick went into the Marines and O’Neill headed into the Navy at 19, after returning to Illinois from the International High School in the Netherlands. She had ended up in Europe when her mother took a position there. O’Neill had caught wanderlust while abroad and was hoping to become a search and rescue swimmer and travel the world. In her own words, O’Neill thought she was “never going to come back home.”

Then came 1999 and Hurricane Floyd.

O’Neill was stationed in Virginia when Floyd hit the eastern seaboard and she was blown from a balcony to the pavement below, breaking her neck at the 5/6 vertebrae. She became a quadraplegic. For the next several years she was grounded, engaged in a battle to reinvent herself and her life. She found solutions to challenges and challenges in solutions. Needing a place to heal and reconfigure life, she came back home to Des Plaines  to utilize the family support system and world class disability rehabilitation resources available at the Edward J. Hines VA Hospital near Chicago. When she began foundering and feeling isolated at this sudden and unexpected return to her childhood home, and the end of rehab, O’Neill launched herself into completing the higher education she had planned on getting to later rather than sooner.

Fast forward to 2008. O’Neill had completed a B.A. degree in Education (Learning and Organizational Change), and a M.A. in Learning Sciences at Northwestern, immersed herself in disability community outreach and mentoring, authored a children’s book, facilitated a universal design project with the Chicago Children’s Museum and medalled at the Veteran’s Wheelchair Games. She had a great adapted home, friends, the support of family, and a new business, O’Neill Contractors, Inc. She could see that she had succeeded in holding ground, in staking out a different yet still rich and valuable life, but she couldn’t know that an entirely new life would result from the achievement- Dylan. 

An unexpected pregnancy led to the birth of her son Dylan in September 2009. O’Neill says she “wasn’t really worried” during her pregnancy. Instead, with the same optimism and grit she had used to become a soldier, and remake her life after her fall, she prepared for motherhood. Working with the Rehabilitation Institute of Chicago, specifically an occupational therapy program for expectant mothers and parents, her house was adapted for parenting. She secured adapted baby care equipment and learned how to utilize personal attendants trained to support her psychological centrality to the baby while facilitating the mundane aspects of childcare. It never crossed O’Neill’s mind that she couldn’t do it; more importantly, in retrospect, it never crossed her mind that other people would think she couldn’t do it. Sadly, that would change.

O’Neill had worked out a strategy to care for her infant, like all new parents must. O'Neill recognized and understood that her physical condition required 24 hour assistance to support her in caring for her newborn son. With this in mind Kaney allowed the father of the child, to come over from 7pm to 7am to assist her with the baby. A trained personal assistant helped her during the day from 7am to 7pm. She was tired, harried, soaring from total joy to total anxiety- a typical new mother. Then, on Sunday, September 8, 2009, she was served with notice of an Emergency Hearing scheduled for the next day. There had been no warning, no discussion. She had no idea until then that  the father of the child intended to move for immediate and full custody of Dylan.

The shock ran deep. “I was totally blindsided” O’Neill recalls. The romantic relationship between O’Neill and Dylan’s father, 18 years O’Neill’s senior, had been brief. He had been there since the birth sharing time with Dylan and, in O’Neill’s words, had always seemed “unconcerned and accepting” about her disability. It struck O’Neill as surreal that  Dylan’s father would suddenly and formally petition a State Judge to remove Dylan from O’Neill’s custody because her disability “greatly limits her ability to care for the minor or even wake up if the minor is distressed.” Moreover, he was petitioning for recognition of paternity and was prepared with a DNA test; according to O’Neill this meant that while  she had thought everything was fine, Dylan’s father had secured a DNA sample.

The inability to care for the child was the central allegation, but there were others. According to O’Neill, Dylan’s father alleged that because O’Neill used others to facilitate childcare, the child would not have consistency in caretakers and this would be damaging to Dylan’s psychological development. He further alleged that he was the primary care giver of their child. Even though the baby had resided in O'Neill's home and she had been providing/facilitating all his care 24/7 since his birth.

O’Neill became frantic. She began calling every organization she could locate for help. The Christopher Reeves Foundation gave her the name of a local lawyer. The lawyer agreed to appear on her behalf Monday morning. 

At that first hearing on September 9, 2009, O’Neill realized that there was a real possibility of losing Dylan. The court granted paternity to the father, gave him liberal visitation and appointed a Guardian Ad Litem (GAL) to Dylan.  A GAL is an attorney to whom the court affords the power to investigate parents in custody matters and then informedly speak to the court regarding the child’s best interest. They are not typically appointed unless the case is high conflict or there are unusual circumstances. The GAL immediately scheduled a time to observe O’Neill with Dylan in her home. “Can you say awkward?” O’Neill recalls, “It was like my whole motherhood was being investigated. I wanted so much to prove that I could provide all my son’s care just perfectly.” The GAL did not ultimately file a report with the court and O’Neill found her to be somewhat fair in their conversations.

While her attorney for the Emergency Hearing was a competent family law practitioner, it was clear to O’Neill that “family law lawyers in general don’t seem to understand much about parenting with a disability.” She is right. The way family law attorneys function, they generally must become experts on any particular or unique issue that is present in their general case. If a parent follows a minority religion, they become an expert in what family law jurisprudence says about the consideration a court may or may not give to the parent’s religion. If one parent is gay, they have to do the same regarding sexual orientation. In this case, the attorney would need to quickly learn a great deal about parents with disability and the law. 

To facilitate this process, O’Neill contacted me. I am an attorney and social researcher with an organization called Through the Looking Glass (TLG), in Berkeley, California. TLG  is funded by the the U.S. Dept. of Education (NIDRR) as The National Center for Parents with Disabilities and provides an array of services for families with disabilities. II direct The National Center’s Legal Program.

I wasn’t surprised at the allegations. After six years providing advice and information to parents and professionals in over 500 family and dependency cases involving parents with disabilities, it had become clear that the biggest problem was that people didn’t know what they didn’t know. They didn’t know about adaptive equipment. They didn’t understand the techniques for lifting, holding and interacting with babies that people with disabilities and the clinical experts in this field had developed. They didn’t understand how the training of support staff and family could allow mothers or fathers like O’Neill to stay psychologically central to their babies.

Because of this basic problem- that judges, attorneys, evaluators and even parents often just accepted with no evidence that a parent like O’Neill can’t parent- it was always important to try and educate the parent’s attorney and create evidence of capacity so the attorneys could, in turn educate the court and make proper arguments.  Illinois was not one of the handful of states with law requiring the party alleging disability was detrimental to the child carry that evidentiary burden. It therefore became more vital to ensure that the attorneys, and by extension the court and Dylan’s father, understood how O’Neill parented and that she had a right to do so.

That September  I did an intake with O’Neill, consulted with adapted baby care specialist Christi Tuleja, and, on October 12, 2009, sent a technical support letter containing seven recommendations for ensuring a fair custody process if disability remained a central issue.  

Luckily it would not. At least not in court.

Soon after  O’Neill and I began working on preparation for the custody process, the Chicago Tribune newspaper caught wind of the story. Journalist Hedi Stevens had done a piece in August of 2009 about O’Neill’s pregnancy and impending motherhood. Journalist Sarah Olkin now followed up on this new and unfortunate development. Olkin interviewed O’Neill, her counsel, me and local Chicago family law attorney Howard Levine (who was not affiliated with the case). The resultant article would change everything and move the main act from the court to the media in many ways.

In the article, I made the case that parents with disabilities are “wrongly perceived to be unable to meet the standard [of good parenting]” while Levine exemplified this by stating "Certainly, I sympathize with the mom, but assuming both parties are equal (in other respects), isn't the child obviously better off with the father… [w]hat's the effect on the child -- feeling sorry for the mother and becoming the parent?"

O’Neill finds Levine’s statements to be “discriminatory and extremely offensive…” especially the second statement that Dylan would necessarily either pity or parent her in the end. As she says “Why assume he would feel sorry or become the parent?” Why not, she poses in our correspondence, assume that Dylan would simply feel “proud that his Mother triumphs over adversity and can, indeed, parent from a seated perspective?”

The first outcome of the article was that Thomas Demetrio, partner at the prestigious Chicago law firm Corboy & Demetrio, read it and decided the whole thing was problematic and unjust enough that he would take the case pro bono. He was actively involved in the Disability community and had personal friends with disabilities that effectively parented their children. For O’Neill this was an answer to her prayers. “The lawyer bills were accumulating quickly. The cost of a custody battle was simply above my means and I was even contemplating taking out a second mortgage on my home to fund my legal defense.” This is a common lament of parents, especially parents with disabilities in family court where, unlike child welfare cases, they have no right to legal representation of any kind unless they can afford a private lawyer. 

Going forward he would direct the litigation and his associate Michelle Kohut would handle the actual appearance and daily work of the case. The second outcome was a testimony to the power of media in such cases. In O’Neill’s recollection, when she first appeared before Judge Patricia Logue for the emergency injunction, the judge said “I hope you aren’t going to tell me this [case] is about her disability,” and Trais’ counsel replied that disability was not the only reason. There was some limited mumbling about the disability being a small part of the overall case for custody, and then it died away altogether. O’Neill reflects that it felt like “The [Chicago Tribune] article meant that they weren’t able to even pursue the disability angle anymore. It seemed to magnify the violation of my civil rights and after that they never seemed to bring it up again, at least not openly.”

But, while the media attention garnered positive substantive outcomes for the case, which began wending its way along the usual trajectory of family law cases with negotiation and mediation and tentative temporary agreements while permanent ones are crafted, it generated a whole strange online universe of further articles and the ubiquitous post-online-article-commentary sections.

Following the Trib article, which ran on December 20, 2009, on December 23, 2009, O’Neill did an article featuring adorable pictures of her with Dylan in the online Disability Culture blog ‘The Curvature.” Cook County judge Patricia Logue handed down a formal Gag Order against O’Neill. The order required her to not only cease all discussion of the case with any media outlet, but to refrain from posting any images in public forums and remove all those now posted online (which is, of course, nearly impossible).

But, as we know, new media does not rely on first person interviews. O’Neill’s story went viral. Without her. After the Trib article and the article on The Curvature, the New York Times picked up the story, as did ABC, MSN and CBS news in the U.S. They all ran stories along the same lines as the Trib article; Quadriplegic Mom May Lose Custody of Son. At the same time, the blogosphere was paying rapt attention. There were stories on parenting blogs like, and the NYT parenting blog, on legal blogs such as, on disability blogs including, and even the particularly specific feminist blogs, and Interest was not limited to US territorial waters, either. In the UK, where there is a robust parents-with-disabilities movement, the story caught the eye of mainstream news and bloggers alike. There was a story in the international public radio blog and discussions on the case in international disability and human rights blog and

The traditional media articles themselves were more or less objective: mom seems to have it together, should this disability even be of any particular concern,  debate on that  point. Depending on the blogs angle (legal or disability or feminist or parenting), the story could tilt in one direction or another and a less sophisticated understanding of the impact of disability on parenting can be seen. Of course, these were proper articles, with by-lines; someone was responsible for the content and identifiable by a reader. The real story was in the commentary.

Oscar Wilde once said “give a man a mask and he will reveal himself.” The anonymous commentary sections following articles on this case gave our society a mask and it revealed in high form the deep and sometimes twisted biases parents with disabilities, humans with disabilities in general, really, face in our post-ADA era of supposed tolerance. O’Neill says “the extent of the bias was, just, shocking, really…people could be as prejudiced as they wanted to be.”  Comments after articles in major media outlets such as the NYT, ABC and YahooNews included the following:

“This has nothing to do with her love for her child. She realizes that she can screw the father out of big $$$ for child support if she keeps the kid. Then she can hire a nanny (on taxpayers' dollars) to care for the kid and have money for herself in addition to her settlement money. Anyone who says, all things being equal, that a handicapped mother is a better parent than an able-bodied father has had too much feminist cool-aid to drink.”
“Sorry folks - just because she’s the mother doesn’t mean it’s in the best interest of the child for her to have full custody of their child, and her disability is relevant, just as if dad had a drug addiction or mom had a job where she was gone all the time, and so forth. Frankly, it sounds like she’s getting a lot of services while many other people get nothing in terms of help.  I wonder about how she managed to manipulate the system for herself so well while others go without...”

“Wow, really guys? I mean, I'm all for the emotional aspect of this, but realistically, he has every right to ask for full custody. What makes her a "fit and proper" parent is the ability to take care of the child, and I'm sorry to sound callous, she just doesn't have that. Yes, she has a strong support system, but SHE isn't really taking care of the kid, they are.”

“Hm, I think I'm on the side of the dad with this. I agree with the previous statement, if you've ever had a kid, you know damn well that it's a very taxing endeavor for anyone, especially when some type of disability exists. Not saying she doesn't love her kid, not saying she won't try using other people, saying she won't be able to be a full-time parent and give her child the things he needs. Ever seen the movie I Am Sam? Case in point. There has to be a line drawn, you have to look past morals and love and look at reality sometimes.”

“As for her ability to be a primary care giver, I think it is questionable. Love makes a parent, yes, but love isn't enough to make a care giver. You need to be able to pull them off of book shelves and tackle them before they end up in traffic.”

“It's wonderful that most of you believe she deserves the right to have a child (which I don't entirely disagree with), but caring for one? She's not doing that now! Her family, nurse, and dog are. What happens when her mother dies? when her brother decides it's time to have a family of his own? Doesn't this child deserve to have a parent who can pick him up when he's crying? Who can stop him from putting himself in danger, and protect him when it's necessary?”

“Sounds to me like the father has the best interest of the child in mind. He is able bodied and can give care to his child fully...unlike mom.”

Overall, for O’Neill, those commentary sections had to be painful in the same way cold air is painful blowing over a wound. Here she was fighting for the fundamental right to equal protection as a parent of her small baby and she was being eviscerated by anonymous castigators-at-large. Moreover, with the Gag Order in place she couldn’t even address the comments in a public forum. But, in a way this could have been of benefit. If she had talked back, argued, responded, the commentary may have become more circumspect. As it was, commenters remained brazen and wrote their true feelings. She feels that this was important for the validation it gives to the disability movements premise that legal protection under the oft impugned ADA is warranted and necessary despite the appearance of societal goodwill toward people with disabilities.

As O’Neill sums it up, “…it’s rare for people to understand, really understand, what it is like to have your civil rights violated in America today. We [people with disabilities] are still fighting our fight a bit, you know?”

These days life with Dylan is calmer and less filled with the adrenalin rushes of worry and strategizing and relief when something goes right in the case. “I’m still just trying to catch my breath and reflect on it,” she tells me, “I know that in many ways it made me a better parent. What doesn’t kill you makes you stronger, right?”

O’Neill does not obfuscate the challenges of parenting with her disability. She says sometimes it “just rips my heart out not to be able to do physical things [with him].” But, using “mutual adaptation,” functional toys and well-trained staff, O’Neill and Dylan are making a molehill out of O’Neill’s mother’s-mountain of worry.

“Mutual adaptation” is a phenomenon identified by researchers Drs. Hal and Megan Kirshbaum in the 1980’s. They were filming parents with disabilities caring for their children and realized that the kids adjusted their own behavior, without any evidence of stress, to the physical limitations of their parent’s functioning. Dylan was engaging in mutual adaptation when, despite O’Neill’s anguished worrying over how she would do when he started to walk and fell, he adjusted how children usually learn to walk (using solid inert objects like sofas and side-stepping, then moving forward into space unassisted, by using her footrests to practice moving forward until secure. He continues to engage in this dynamic in other ways. O’Neill notes with pride that when he wants her to read to him, he had learned on his own, even before turning one, to bring the book he wanted and lay it on a surface that was just the right height, in a position that made it possible for her to pick the book up or view the words from an elevated surface.

They play basketball together using a Little Tykes basketball hoop and ball for toddlers that is the perfect height for Kaney seated in her chair to make shots right along with her baby boy. “He’s learned to give a good ‘UHHH!” when he slam-dunks” she says with a chuckle.

I ask O’Neill, now that she is in a calmer place in her life as a mother, what she wants for Dylan in the future. She is quiet for a moment, and then says with conviction “I want him to be the kind of man that sees differences as challenges. I want him to be someone who understands that everyone in the world has something they have to overcome.”

No doubt Dylan will turn out to be such a man; it’s what you’d expect from this soldier’s son.

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