In Memory of Courtney Liltz

"I think an ideology, a dangerous ideology, that preaches that people are better off dead than disabled is what led to Alex Spourdalakis' murder."

Ari Ne'eman

A young Courtney Liltz hugs adoptive mother Bonnie. ©CNN screenshot

Bonnie Liltz was given a reduced charge of manslaughter and sentenced to four years in prison for the premeditated murder of her nonspeaking disabled adopted daughter Courtney.  Courtney was a 28-year-old woman with CP and had a right to survive her mother's potential death. Bonnie's excuse was that she has severe health concerns and did not wish to die and leave Courtney back in an institution where she would receive terrible care.

Bonnie was 19 when she was diagnosed with ovarian cancer. The treatment at that time was basically radiation sickness inducing and Bonnie had devastating health problems ever since. She chose to adopt Courtney, fully aware of Courtney's lifetime support needs as well as her own frail health. During sentencing a parade of family, friends, and neighbors requested leniency. Her attorney repeatedly stated that Bonnie had dedicated herself to Courtney's care and that Courtney's murder was an act of love.

Nope. NOPE. NOPE.

This is such an insult to the hundreds of disabled and chronically ill parents with high support needs who lovingly future plan and parent their own disabled children and keep up with changes in the law that have changed service providing for adults with intense support needs like Courtney. Courtney could have remained in Bonnie's home, the home she knew and grew up with if Bonnie had achieved home ownership. Courtney was adopted by Bonnie at age 5. So in the 23 years that followed, Bonnie, who knew she had a horrific health history and declining health, did not reach out to all these friends and family who are singing her praises in court and come up with the 24-hour nursing and personal care plan Courtney would need after she died? Did no disability service agency explain that Courtney could have the services she needed at home or in the community? The tacit structural ableism rampant in media reporting of these events leaves so many questions unanswered because their narratives leave Courtney erased from both her life and death, her existence defined by her mother as self-sacrificing care providing single-parent, her mother's friends and family relating her mother's struggles, and  her mother's justifications for her murder. Courtney deserves better.

Courtney with mother Bonnie in a holiday photo. Courtney
was murdered by Bonnie June 5,2015  ©Facebook

Why didn't Bonnie, knowing her own health was failing, set Courtney up in a community-based placement of her own with staff to care for her after Courtney's 21st birthday? Why would she just say to herself "If I die, what will happen to Courtney? Well, I'd better kill her then?" Why is it that in so many of these murder-suicide attempts the murderer seems to recover without any real harm but the disabled victim has no chance of survival?

If I die, and any of you, my friends, family, or  colleagues, say "she dedicated her life to that severely disabled son of hers" I will come back as a ghost and kick your collective asses. If you have any love and respect for me in life, do me the service of not cheapening my relationship with my son after my demise. Mustafa deserves better.

Let us make this clear. If I die, the only thing I want anyone saying about me and my son is that I dedicated my life to fighting for my son's right to have autonomy and as much agency in his own life as he can manage. Anything else is dehumanizing to my son, and my son deserves better than to be defined by the idea that I was unpaid support staff for him and I mothered him. He can't become some sort of object of pity in his dead mother's life. If I die, I expect our community to step up and help my husband and adult daughter ensure my son has his human rights to a free and appropriate education, a community-based living placement neither in a group home nor an institution and the supports he needs to thrive after I'm dust in the ground.

The only legacy any parent who is the primary care provider for a nonspeaking disabled person must leave is the memory of their efforts in life to guarantee the survival, autonomy and freedom of that disabled human to live as full a life as possible whether they survive to care for them or not. Everything we do, from their diagnosis day to the last breath we take, must ensure the survival of our offspring. That is what a mother's job is. That is my damn job. It doesn't make me a warrior mother. It doesn't make me superlative. It makes me Mustafa's mother doing my job by him and fighting for his human rights to respect, dignity and access to the same community I fought to live in as a woman of color. 

Murder is not an act of mercy. We must all stop propagating this lie that murdering a severely disabled loved one is an act of mercy simply because so many people are so ignorant of what it means to be disabled that their fear of visible disability drives these horrible thoughts. If you are a parent and have ingested this poison you must expel it from your heart. This ideology that people are better off dead than disabled is a terribly dangerous lie. Part of moving past that toxic culture and towards saving lives is to recognize that everyone has the right to an autonomous life and agency in that life. Courtney's life was hers to live and not her mother's life to take. Mustafa and I fought to bring him into this world and survived. I sure as hell am not going to take the valiant war he has fought to overcome the mountain of obstacles posed by his disabilities and dishonor our joint fight for survival by murdering him simply because I have been told my life may end before his.

Rather than fearing what the future might hold for our offspring help build a world of communities designed to accommodate everyone and stop being afraid to let your disabled children grow up and live an adult life. Imagine what their lives without you will look like and help them make that happen now. STOP KILLING THEM. Bend your collective parental wills and energies to making the world work for them. The ultimate failure in this cycle of violence against disabled adult children by their carers is a systemic one. Bonnie should have been shown that Courtney would not have to survive her death in any institution and Bonnie should have been able to transition Courtney into an autonomous community-based living situation at 21 that Bonnie could have overseen for these 7 years. I would argue that if Bonnie truly loved Courtney as much as everyone said she did, a secure future plan being implemented now for Courtney would have dismissed thoughts of filicide on Bonnie's part and she might have sought professional help for her own wish to end her life, and possibly two lives would have been saved.

What needs to happen is that we must all get to work on the foundational issues that can prevent these murders before they happen. That begins with all of us parents understanding that our deaths are not the end of the world for our severely disabled children. We must act now to ensure they are able to have an excellent quality of life both now and when we leave the world. Fight to save our children's future not to end their lives.

If I die, and my son survives, thrives, and remembers he had a mother who loved him, I know I will have left this earth feeling as if I have achieved paradise. His survival, his growing up to be a man who can exercise his human rights and civil rights and be accepted as he is my only goal. Remember that. Remember the tragedy of Courtney Liltz and the toxic ideology that led to her murder.  Remember Courtney as a woman who is being erased from her own story and don't allow it to happen. Be aware that filicidal and suicidal ideations require professional help. If you hear it, get that parent help. Don't enable it by supporting this ideology on any platform for any reason. Don't stand by and do nothing, then sing the praises of the murderer. Courtney is not better off in Heaven. Courtney is not better off knowing the one person she trusted murdered her. To claim a belief in God and take a life placed on this earth and meant to outlive you means you have no faith that God will protect the life He brought on this earth after you've left it. That is the ultimate in religious hypocrisy.

Justice was nearly undone by those who by their testimony eulogized Bonnie Liltz, and thus erased Courtney Liltz's value as a person with the right to live, decimating her rights as a victim with the right to justice. If we continue to allow this mentality to spread, others will target our children and decide it is okay to end their lives without their consent or our knowledge. So wake up and educate people about your disabled loved one's right to exist. Begin with your own friends, neighbors, and family.

I was leaving the hospital, being wheeled out to my transportation.The LPN, said: "your son is autistic? Wow, that's so sad." I turned in my wheelchair and replied, "Oh? Why?" She was so taken aback that she began with "well, uh, I mean, er, you know.."  I was firm. "My son is brave, resilient, and compassionate. He is also incredibly patient." "So it is not sad. It is an honor to be his mother and be part of his life." We spoke a while longer, and she left thoughtfully reflecting on what we discussed about Mustafa and his value as a person.

Begin by changing the conversation. No exceptions. What is at risk is our children's lives.
Peace

On Digital Exhibitionism By Autism Parents: Why Parents Live Tweeting Their Disabled Children's Worst Moments Is Red Flag That Should Concern Everyone

Giving autism parents a bad name:  Jason & Kate Wells
credit Twitter

The Internet age has given rise to a dangerous type of exhibitionism among people in general and people who need parenting courses in particular. This becomes dangerous when the pathological demand for public attention places a child at risk. There is a pattern I have observed among autism parents who later do harm to their children. This is how the pattern plays out.

1. The parents spend over 60% of their days generating written content that disparages their child and presents themselves as martyrs for having to parent divergent children.

Isabelle "Issy" Stapleton credit Facebook

2. The parents escalate to posting videos of their children at moments of crises in order to support their case that the child is at fault for the failed lives of their parents. No one questions whether the parents induce crisis in order to record content that can be publicly shared.

3. The parents are successful in gaining either local or national media attention, thereby rewarding the production of content damaging to a disabled child that will remain on the internet forever.

4. The parents crowdfund for assistance from the community based upon the negative content produced about their children.

5. The parents attempt to murder their children.

6. The parents are defended by others for attempting to murder or murdering their children because prior negative content showing their disabled child at a moment of crisis is used as an excuse.

While all this is happening no one seems to ask:

How have the parents the time to videotape a moment when they should be keeping their children from harm to themselves and others?

How have the parents the time to constantly broadcast negative content when parenting the victimized child is such a tremendous challenge?

Alex Spourdalakis surrounded by funeral flowers

Why any parent in good conscience can believe it is okay to broadcast the worst moments their children experience to a global audience?

Why aren't the parents seeking mental health support for themselves if they have entered a state of depression so extreme that all content they produce about their own children is negative?

For those readers born before the internet and social media, imagine what it would be like to have your worst, most humiliating childhood moments broadcast forever to anyone who chose to view it. There was a period when there were no rules to social networking, and parents would demand to be added to adult children's accounts only to post embarrassing and on occasion, humiliating photos of their own children publicly to be viewed by the person's colleagues, peers, and complete strangers.  It took time for rules to appear that warned parents that the internet is a public broadcasting method and content posted on it can become viral and magnify harm done regardless of intent.

I am tired of this pattern of self-serving exposure at the expense of one's neurodivergent children and frightened of its consequences. Do we believe this is not a problem? Examples of parents who followed this behavioral pattern:

Issy Stapleton's mother, whose blog about her was named The Status Woe,  and who drugged her, left her in a car and tried to poison her with smoke from barbecue grills.

Alex Spourdalakis' mother and godmother, who after massive media coverage and fundraising efforts using video of Alex in four point restraint naked on a hospital bed, tried to overdose Alex on sleep medication, then stabbed him repeatedly and violently to death. Not satisfied, they then stabbed his cat to death as well

London McCabe, 2014, credit NBC News

London McCabe's mother, who after adopting a similar style of blogging and successfully fundraising, made statements on camera in front of her son about wanting to "pull a Thelma and Louise", and later threw him off the Yaquina bridge. I could fill this blog with examples like this. It is simply too heartbreaking to do so.

 In the past, I tried to call out parents who exhibited these types of behaviors because I feel these acts are a sign of worse things to come and I strongly believe this is a pattern that will not end well. Posts like "You are NOT Adam Lanza's Mother"  are an attempt to show other disabled offspring's parents that these acts are dangerous, permanently harm their children, and are a red flag the parents need counseling. But the internet and any moment of media attention are lures that no voice of reason can overcome.

Apparently, parents Jason and Kate Wells have not garnered sufficient attention for themselves and have taken to live-tweeting their autistic teenage son having a meltdown on the excuse that they are educating others. I will not post the article about it. All I will say is they are a couple from Peterborough, Canada. Dehumanizing your own child does not educate anyone about autism. This degree of exposure of a vulnerable teen is no different from making them a sideshow act at a circus. It is abusive behavior and bad parenting. It is a display of the serious psychological problems the parents are having and is a sign that the parents need crisis counseling and intensive interventions for their own mental health and the safety of their neurodivergent son. It does not show anything about their son, his neurology, or his adolescence, except the parents' own ignorance of what is happening to their son when a meltdown is occurring and how to help him manage it in a humane, professional, and loving manner.

I take issue with any parent violating health laws, the privacy of their own children, and placing their children at risk of harm to feed their followers and gain social networking capital. I find it particularly disturbing behavior when the child is disabled and may never be able to litigate against the parents for presenting damaging video content on the internet about them.

The most important takeaway from this latest episode of digital exhibitionism at the expense of a disabled teen is all of us who are parents to neurodivergent children need to understand that this is not something that we should be applauding and encouraging. We should be warning parents about it as an indicator of serious problems in that home. It is a crooked line in a pattern that leads to a bad end. Every autistic teenager is not melting down attacking their parents 24/7 across the country. Broadcasting individual negative experiences in a one-sided manner and generalizing across the community because individual parents may have a personal wish to get their teenaged son out of their home is WRONG, disturbing, and causes harm to all of us. Address the actual issue. If as parents the Wells need to transition their son out of their care because they are unable to care for him, they need to contact the proper authorities or do what other parents have done. Parents have created individualized housing, care, and transitional services for adult children in places where those services are lacking. Had the Wells spent less time broadcasting and more time reading, perhaps they could have broadcast how they worked with their son to help him through the additional stressors of his teen years and gain him some respite and autonomy from them.

We need to begin looking for solutions to help our children rather than using the internet to make their lives all about ours. It is called being a parent. Let us all begin acting like responsible ones.


-----------

In memory of all the murdered divergent children, with hope that speaking out helps end the killings

The Matt and Isabelle Stapleton Open Letter Project

I am tired of the fascination many in our country have with the perpetrators of murder and attempted murder. This fascination is disturbing and when the victim is disabled,  habitually serves to completely erase them from the story of their own lives. The effort victims who survive make to recover should not be ignored because they are disabled.

I am therefore offering an alternative to the opportunistic behavior of attention seeking blogger parents wishing to twist the attempted murder of Isabelle Stapleton into some sort of sick platform to complain about their lives and vicariously publicize threats to harm their own disabled children.

I am writing to counter that blogging traffic, although I doubt it will catch on. I do not feel it is right to promote the name of an attempted murderer, no matter how upset I am that autism mothers who support this woman are generalizing and presenting their personal poisonous opinions as if all autism parents share them. I am also doing this to counter Phil Mcgraw using a tragedy to drive his show ratings up by othering the disabled victim and giving a confessed premeditated murderer a platform to justify her actions.

 Here are my letters to Isabelle and her father Matt. I have no idea if this will fit under a flashblog hashtag. This is best I can do.

Dear Mr. Stapleton,

First of all let me express my deepest sympathy for the tragedy your family has weathered and wish the best for you and your children. I was amazed and happy to see Isabelle’s progress in a youtube video that you were kind enough to post publicly. Thank you for that glimpse into Isabelle we were not really allowed to see before this catastrophe took place.

I know it is not my business, but in light of recent spates of autism mom blogging in support of your ex wife and her recent appearance on the Dr. Phil Show, I would like to ask a favor. I would like to ask that you consider securing legal representation for your daughter Isabelle and having that law firm or attorney sue to insure your ex wife does not continue to benefit from your daughter’s name, her attempted murder of Issy, Isabelle’s autism label, or any past care providing or contact with your daughter. I believe any attempt at publishing or making further television appearances, blogging, or making any media contact must be included in such a suit. 

I am asking because I am also called an autism mom, and I am offended by each and every mother who is presenting your ex-wife as the standard bearer for autism moms in general. I have no desire to be seen as someone who views my son’s autism as your ex-wife viewed her daughter’s autism. I do not give any other autism mom permission to make sweeping generalizations about me or my son. My son is medically classified as nonverbal. Like Isabelle, he has overcome great challenges and survived. He may need help all his life but it is my honor and privilege to be one of those who provides that help. He is not perfect. He has difficult moments. But he is always my autistic son, and I am proud of the way he deals with his difficult days and his good ones. Your ex wife doesn’t have a right to continue having a platform to defame my son and your daughter by generalizing private experiences into public thoughts. She lost that right when she chose to try and kill Isabelle.  Many autistic children are being bullied to the point of torture because of these statements, made thoughtlessly and selfishly by mothers unhappy with their situations and this needs to stop before more innocent children are harmed. 

Maybe you’ll read this and consider my request. You have taken over a family as a single parent and while I don’t agree with your support of Autism Speaks, I see you are doing all you can to help all your children move past this and make Isabelle certain that she is a wanted part of your family. I realize that litigation will bring up painful memories. But I also believe many attorneys would be willing to help pro bono.

Lastly I hope you do not make the mistake your ex wife did and anthropomorphize autism into the catchall evil neurological whipping post because that makes your daughter an object of hate. None of us want to see Isabelle victimized again. 

Sincerely 

Kerima Çevik
Mother of the Great and Powerful Mustafa, age 11, Autistic

Dear Isabelle,

I have wanted to write you for a very long time. I wanted to tell you how sorry I was to read about all the awful things that happened to you. Your mother should not have done the things she did to you. She was wrong. Nothing that happened to you was your fault. Please believe that.

 I have a son in your neurotribe. He is autistic and he is learning to type to communicate. He’s eleven years old right now. When he was four, we were told he was autistic. That day a great many negative things were said about our son. We were told we should be afraid of him, especially when he got older. Guess what? He’s now officially taller than I am. He is strong. I know because when I fell one day he grabbed my arm and caught me! But he is nothing like anyone said he would be. His dad and I are so glad we didn’t listen to them. We searched until we found a whole world of autistic adults. They helped us understand our son by telling us about their own lives and mistakes made to them so that we would not make the same mistakes with him. 

I am writing to tell you that I have a gift for you. I know you are fifteen now. When you and your family are ready, my gift to you is a open invitation to publish anything you want to write on my blog. The intellectual property rights to whatever you write will remain with you. I want you to know how important you are to autistic people. I also want you to know that parents exist who believe in their autistic children, as your father and family believe in you. We are here when you need our support. Just feel better, and take care of yourself. 

You have an army of friends here in internet land. We love you and want to support you speaking out in your own voice about anything you want and being heard. 

Best wishes,

Kerima