Tony Mantor: Why Not Me the World
Colleen Scott: One Mother's Journey Through Schizophrenia
Sun, 18 May 2025
Send us a textA mother shares her 18-year journey supporting a son with schizophrenia through mental health system failures, incarceration, and experimental brain surgery.• Colleen Scott's son started showing signs of schizophrenia at age 17, withdrawing socially and exhibiting erratic behavior• A prosecutor advised having her son arrested "to get him in the system" for mental health help, resulting in traumatic incarceration• Laws preventing family commitment, alongside HIPAA restrictions at age 18, create nearly insurmountable barriers for families seeking help• After years of struggle, Colleen secured disability benefits and eventually enrolled her son in an experimental Deep Brain Stimulation trial at Johns Hopkins• The mental health system's integration with the legal system often criminalizes mental illness rather than treating it• Current group home living with court-ordered treatment provides some stability, though interactions with police remain common• Colleen advocates for better training for law enforcement and restoration of family commitment options with proper safeguards• Organizations like the National Schizophrenia and Related Conditions Society (NSSC) offer hope through focused advocacy and lobbying effortshttps://tonymantor.comhttps://Facebook.com/tonymantorhttps://instagram.com/tonymantorhttps://twitter.com/tonymantorhttps://youtube.com/tonymantormusicintro/outro music bed written by T. WildWhy Not Me the World music published by Mantor Music (BMI)
Chapter 1: What challenges did Colleen face with her son's schizophrenia?
Welcome to Why Not Me? The World Podcast, hosted by Tony Mantor. Broadcasting from Music City, USA, Nashville, Tennessee. Join us as our guests tell us their stories. Some will make you laugh, some will make you cry. Real-life people who will inspire, and show that you are not alone in this world.
Hopefully, you gain more awareness, acceptance, and a better understanding for autism around the world. Hi, I'm Tony Mantua. Welcome to Why Not Me? The World, Humanity Over Handcuffs, The Silent Crisis Special Event.
Today, we're honored to be joined by Colleen Scott, a resilient mother whose son has endured a profoundly challenging journey with schizophrenia, marked by countless obstacles in the pioneering trial brain operation. She's here to offer an in-depth account of her experiences, bringing a wealth of knowledge and perspective that promises to enlighten us all.
We're truly privileged to have her share her story with us. Thanks for coming on. Yeah, well, thanks for having me. Oh, it's my pleasure. I believe you said your son is 35 now. Is that correct? 35, yes. How's he doing now? Is he holding up okay? And what does his daily routines look like?
Today, he's actually in the hospital right now. Suicidal ideation, which is not that common in the 18-year history that he's had with his schizophrenia, which is his diagnosis. His sister, Karen, who is actually a doctor in Michigan as well, has said that, Mom, I've noticed every year around the holidays, which is a pretty common thing, this does happen. But in general, he's...
I think he's considered to be a difficult case or a serious case of schizophrenia. Over the years, I've seen little adjectives hooked on in front of it by various doctors during various hospitalizations, sometimes paranoid schizophrenia, sometimes undifferentiated, things like that.
Okay. Do you see him getting this under control with the doctor's help? What's the overall outlook from the doctors on what his future can look like?
Well, schizophrenia, I think, as an illness, and as far as the public perception of it as an illness, has been damaged by SAMHSA and other federal health agencies by conflating it with this whole recovery paradigm goal that they have, which is nice for people. People who have minor depression or, you know, are going through menopause, perhaps, or who have minor drug addictions.
Not that they're minor, but you know what I mean. They're not about to pass away from overdose every night. But, you know, these things have been combined in these agencies. That is to say, alcoholism and drug addiction, a lot of mental illness, but the problem with schizophrenia, and I suppose some other serious mental illnesses, is... that they are not really curable.
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Chapter 2: How did legal issues impact Colleen's journey?
Actually, that was my next question. Did you follow through on that? And what were the results?
It was an unmitigated disaster. He was incarcerated. He was subjected to solitary confinement. One has to remember that the people who operate county jails are not medically trained or particularly sympathetic to 18-year-old or 19-year-old boys. It might be perceived as just misbehavior or maybe he's high on pot or something along those lines. So it was very, very disastrous for Jonathan.
He still talks about it to this day, those experiences.
Now, once you followed their recommendations and that process played out and he was actually incarcerated, what was the next step of the journey?
The next real step in this journey did not happen for a few more years. First of all, he was kept in, not exactly, but what the crime was that he was charged with was a felony, which is kind of shocking. And what this crime supposedly consisted in was stalking. But what that really was, was when he turned 18... His father insisted that he go to a psychiatrist.
He refused, again, because of the normal symptom of this disease, especially early on, wherein the patient doesn't know they're ill and thinks everybody else is crazy and there's nothing wrong with them. So at that point, his father said, well, then you have to leave home. He was being rather disruptive as well. This was done as sort of a, you know, shock, kind of shock technique or tactic.
And at the same time, this prosecutor was being consulted because he would come and sleep on the porch of his family home every night. And his father would say, no, you have to go stay in your apartment or, you know, get a job, do this kind of thing. But he had no ability to do that. He hadn't yet been diagnosed. So he was then charged with this felony.
And then somebody in Ann Arbor, in the court system there, going back in 18 years in my memory, but I'm quite sure I remember the details. He was then put in a forensic center, which is designed to determine the criminal's ability to stand trial. So that indicates somebody at the jail recognized there was something mentally wrong with him. But then this went back and forth.
They kept saying, oh, we've treated him for two months in this forensic center and we're now sending him back to the county jail so he can stand trial. Probably the people in the forensic center didn't understand how weak this case was regarding the blocking. I don't know.
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Chapter 3: What are the barriers to getting mental health treatment?
all told me, yes, we used to do commitments for families. We would have to get two psychiatrists and we would talk to family members and we would commit these individuals for treatment, often against their will, because again, they don't know there's something wrong. However, they said, we no longer do this because we're not allowed to. I said, what do you mean you're not allowed to?
And they said, the laws have changed. I think it's because there was a Hollywood sort of scenario that was often played out where family members would commit their spouses because they wanted out of the marriage or something along those lines.
And so the courts and the judges and the lawyers that are involved with this and the laws were changed so that this couldn't be done, so that family commitment was a kind of a thing of the past.
Okay, so what happened after all of this? Was you able to get anything changed or is he still in the system?
It's permanently that way. And that is one of the flaws in our system, on the national level, big flaw in our system. I understand why they closed down the so-called state hospitals because they were, again, in Hollywood, often highlighted as being horrible places that were full of abuse. So there was a movement to shut them down. But then I've read the history on this.
It was actually during Kennedy's presidency where he came up with the idea of this community mental health clinic system. But then he set aside all this funding, knowing that if it wasn't well-funded, especially initially, it probably wouldn't succeed. But then the Vietnam War broke out, and all that money was taken to fight that war.
That's very interesting. Now, once you got through all that, jumped through all the hoops, what happened after he got released, even though he's still in the system?
Well, he was young enough and he had been very popular in high school. So he had enough friends in our local community in Ann Arbor. Most of his friends had gone on to college, but he did start a career of couch surfing for about two years. But then even his friends sort of cut him off because he was too bizarre in his behavior. And I think he may have frightened people.
So at that point, I desperately was and I was getting no advice at all. No counseling from any. I couldn't find a lawyer to help me and I couldn't find a doctor to help me. I had no clue what to do. And I think this is commonly the case with parents. So I decided that he couldn't work. He couldn't hold a job. I mean, we tried that.
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Chapter 4: How did Colleen secure disability benefits for her son?
Well, there's been some changes, yes, in his schizophrenia.
Has it been positive changes?
I would, I guess, say good. Again, I'm often asked by the group of psychiatrists and neurosurgeons who work with Jonathan, what my observations are because it's useful for their study. And I hesitate to say much because I realize whenever you're doing any kind of a scientific observational study, there's so many conflicting causes for any change. It might just be the attention he's receiving.
It might be various things like the month that I spent with him. in the hospital while he was initially getting worked up and when the surgery occurred, so that there's been so many other changes surrounding his life during the period of this intervention that I hesitate to draw any scientific conclusion as to what the cause was.
What do you see for him in the next year or two? Do you see him getting better? Or do you see him, unfortunately, one of those that have to have a watchful eye on him for the most of the time?
The latter. I don't think that he's going to recover, but I'm hoping for improvements, but I'm not hoping for a miracle.
I suppose my main question is, after everything you've been through, your son's 35, navigating the jail system, enduring trials, working through the legal process, consulting psychologists... even pursuing this brain trial. What's your greatest fear now as you look ahead to his future and the possibilities that lie before him?
Well, probably, I think there's a higher percentage of suicides among schizophrenics than the rest of the population. Their life expectancy is shorter, and I'm sure that includes their lifestyle. By that, I mean they're often homeless, sporadically homeless, if not permanently, and just poor health due to lack of money, lack of...
Social stability, you know, that puts them at risk in many ways, you know, dangerous way, you know, sort of traumatic injuries could resolve things of that nature. Those are my fears. And then, of course, my personal fear as a mom is that I won't be here forever. I don't know if you noticed, but I started smoking again. Now, I had never I had smoked when I was a teenager.
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Chapter 5: What experimental treatment did Colleen's son undergo?
Sure. Sure. Absolutely. It's a tough road for everyone involved.
Yeah.
People have to understand that not everyone handles the situation perfectly, which can make things challenging to navigate. The key is finding ways, hopefully, to improve it so that everyone involved can emerge with less harm, fewer problems, and the ability to move forward more easily.
Yes. And that is one reason that out of all the groups I've seen over the years, including NAMI, been around for many, many years, and stands for the National Alliance of Mentally Ill, and it claims to advocate for the mentally ill. It doesn't do anywhere near an adequate job.
I think the NSSC has a focus and ability to do some direct lobbying, which is why I signed up with that group, because I'm hoping to do that.
Yeah, it's a very tough situation. The average person has no clue of what people go through on a daily basis because they're not associated with it. So it's really tough for sure.
Absolutely. And the families and the fear. It's absolutely overwhelming for families. And maybe the commitment procedure of old was flawed. But to me, it's like throwing the baby out with the bathwater because it is needed. We need the ability to bring that. Families now perhaps could be more tightly controlled by a court, but maybe have three psychiatrists interview your individual child.
in some way in conjunction with the community mental health clinic or something so that they can find a neutral place so that the person could be interviewed. There's some, I can imagine some way of dealing with this better than the current situation.
I agree. Things do need to change. The biggest thing I think is understanding. I think all the people within the legal system and not in the legal system need to understand what's going on.
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Chapter 6: What advocacy efforts does Colleen support for mental health?
This poor congressman kind of kicked this mission up to improve the situation that you and I are discussing right now, because He was shocked and even said in a statement, you know, here, I'm a congressman. I can't get anything done for my son. And then I ended up getting hit over the head, which he survived the attack. It wasn't, you know, but it was pretty awful.
Yeah, yeah. I mean, any time that a person has an event, when they lose control of their focus and their mind, it's really tough on everyone involved. So bringing more attention to it, raising awareness, and hopefully fostering a better understanding could make a difference. With that said, this has been a great conversation, great information.
I really appreciate you taking the time to come on and talk with us.
Thank you so much for having me.
Oh, the pleasure's been all mine. Thanks again. Thanks for taking the time out of your busy schedule to listen to our show today. We hope that you enjoyed it as much as we enjoyed bringing it to you. If you know anyone that would like to tell us their story, send them to TonyMantor.com. Contact, then they can give us their information so one day they may be a guest on our show.
One more thing we ask, tell everyone, everywhere, about Why Not Me? The World, the conversations we're having, and the inspiration our guests give to everyone, everywhere, that you are not alone in this world.
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