Five Reasons You Need to Read ‘Ghost Boy’ by Martin Pistorius

Five Reasons You Need This Book ,  Just help us spread the word  & one of these copies could be yours." Image of Ollibean logo. Two copies of the Ghost Boy book cover. The cover has an image of a boy with eyes closed . "Ghost Boy" The miraculous escape of a misdiagnosed  boy trapped inside his own body." Martin Pistorius

Martin Pistorius – Ghost Boy

Martin Pistorius’ honest and chilling account of the abuse he endured exposes the harsh reality for many disabled people who do not have a means a reliable means to communicate . At the same time, it’s a story of his remarkable will and strong faith in unimaginable circumstances.

“it’s exhausting to live in a body that feels like the property of everyone else.” Martin Pistorius – Ghost Boy

Ghost Boy recounts the emotional, sexual, and physical abuse Martin endured after becoming ill in 1988 at the age of 12 and falling into a coma like state. Two years later, he woke up and became fully aware of everything going on around him but unable to move.

The problem was that no one noticed he was awake.

No one noticed for over ten years. Martin’s family and caregivers had ceased seeing him as a person. He felt invisible, like someone who’d woken up from a dream and become a ghost but didn’t know it. He survived by escaping into his mind.

In his mid-twenties, one caregiver treated Martin with respect and dignity, believed in him and completely changed Martin’s life.

Martin Pistorius could be me, he could be you, your child, partner, parent, or friend. Any one of us could acquire a disability at any moment, or have a child, a niece, or grandchild born with a disability. There will be a time where we or someone we love is dependent on another and could be subjected the same abuse and low expectations that Martin endured. The way we treat each other has to change.

Ghost Boy serves as an urgent call to action to completely change the way people with complex communication needs are treated .

As the mother of a non-speaking son, I have seen the subtle and not so subtle ways he and others who communicate differently are subjected to low expectations and discrimination. I have heard their stories, the horrible things people who have been entrusted with their care have said both to them and in front of them, thinking they don’t understand.

For people that haven’t experienced or witnessed this type of discrimination, it’s profoundly unsettling and hard to believe. Martin’s autobiography offers a rare glimpse into the day to day  reality for many non-speaking people. Sadly, it seems to be the norm and not the exception.

Martin is not the first person presumed incompetent because he cannot speak with his mouth. He is simply able to tell his story now because he was given access to communication. How many “Martins” are waiting right now for someone like Virna to see them as human, to talk to them, to notice the subtle ways in which they are constantly communicating?

Thousands? Tens of thousands? Hundreds of thousands? So many people placed in a category thought to be incapable of understanding because they do not have a reliable means to communicate all that they are thinking. Martin puts a very real face on the absolute necessity to treat each human with dignity and respect as well as to provide age appropriate educational and social opportunities.

The problem is once you are placed in that category, it’s very hard for most people to see you outside that category. And, when you’re in that category, expectations are drastically lowered and opportunities minimized. When you are completely dependent upon another for your access to a means to communicate, your food, your positioning- all of your experiences, you have little to no chance of changing things by yourself. At a minimum you need one person. One person who believes in you, presumes competence, and has high expectations.

What if Virna had never come along for Martin? According to Martin, he’d now be dead or forgotten in an institution.

 

          5  Reasons To Read Ghost Boy

 

1. The Importance of Access to Communication and Age Appropriate Media, Educational and Social Opportunities

 

"Without a voice I could not control even the simplest things.”Martin Pistorius

Unfortunately many people who control access to communication devices  for people who have been labeled with intellectual  disabilities require them to to prove, over and over again that they are ready for one. But, as Martin succinctly describes  “his body is unpredictable – just because I can do things one day does not mean I can do  it the next.” This is something that people with movement impairments have said time and time again, but it is still a real barrier for people who need access to communication devices.

Once Martin had access to a communication device, he went from spending his days watching Barney to teaching himself to read and write, work with computer programs, started working , and developed  real friendships in just eighteen months.

He was connecting with people all over the world on the internet and his job provided accommodations and accessibility he had never even dreamed possible. He went on to graduate from college, start his own business, and marry the love of his life.

But, before Martin had access to communication and was labeled with the dehumanizing  “mind of an infant” he was expected to be incapable of further development and growth. No one really spoke to him, he was fed the same thing day after day, was wheeled into a room to watch Barney over and over for years, and given no formal education. Yet even when we talk to infants, we talk to them as if they understand what we saying, long before they can respond. We naturally increase the vocabulary and interactions without any proof that they are comprehending. We vary foods, experiences, and books without a second thought, but the complete opposite was done to Martin .

 

2. The Extremely High Rate of Abuse that Occurs for Disabled People

 

“Humping you like a sack of potatoes, they wash you briskly with freezing water and always get soap in your eye no matter how hard you squeeze them shut, before feeding you food that is either to cold or too hot. All the while they don’t speak a word or smile for fear of seeing a person staring back.”

Martin was horribly physically, emotionally, and sexually abused by caregivers. This should not come as a surprise. Studies show that 70 % of disabled people have been victims of abuse. Reading a first person account of this abuse is horrific, but it’s absolutely necessary because it’s a reality for many disabled people.

The abuse came in many forms. Martin was forced to stay in the same position for hours on end, eat the same food day after day , watch the same show over and over again by people that loved him and thought they were treating him kindly. But, the abuse inflicted on Martin by caregivers is literally unimaginable. He was repeatedly raped, beaten, and verbally abused. He had revolting scalding hot food shoved in his mouth and if when he vomited he was forced to eat that. He was violently given enemas, put in the bathtub, bleeding from enemas, and the caregiver dipped his toothbrush in the same water. He was left in shivering in cold baths and left for hours and hours in the scorching heat. He was left naked in the care center and had his private parts touched by parents of other children. And, as horrific as this abuse was, the anticipation of when it might occur again is equally tortuous. Martin had no way to tell anyone what had occurred nor anyway to prevent his family from taking him back again and again to his abusers.

“Being abused does something to you, it changes something inside of you,” he  said recently. “To this day, even though things are a lot better, I will still have nightmares and flashbacks.”

3. The Importance of Community, Agency, and Daring to Dream 

 

 

“I want to talk about the whole host of other limitations imposed upon people by society beacuse disability is as much about disabling attitudes as it is physical,cognitive,and sensory limitations  If someone does not expect or is not expected to achieve they never will.”Dr. Diane Bryen

Martin was very respected at his job at the AAC center and  became more involved in the global AAC community. He started attending and presenting at conferences around the world . At one of the first conferences he attended Dr. Diane Bryen was a speaker and introduced Martin to a whole new way of looking at disability and his own agency. Dr. Bryen went on to describe one of the best bosses she’s ever had, Bob Williams, who also uses AAC to communicate and  had chosen his own  life.Dr. Bryen asked Martin what he thought one needs to achieve their dreams. But, Martin’s mother answered for him instead of waiting for him to respond, this horrified him . But Dr. Bryen persisted , telling him she wanted his opinion. Finally, Martin answered that people must be  given the chance to decide for themselves what their  dream is  and “People must help you work out what your dream is. They must enable you to have one.”

Dr Bryen’s passionately explained  the importance of not asking others for permission for his dreams. But, this was a challenging concept  for  Martin who had lived a life where every decision was made for him, from the food that he ate to the clothes that he wore. To dream what he wanted for his own life seemed  overwhelming at first.

“I went through a lot of emotions: fear, despair, frustration. But by far was the loneliness and powerlessness – that feeling of utter powerlessness where you have absolutely no say or control over anything in your life… for me, that was the worst,” he said in an interview.

Everyone should have agency in their own lives and as parents and caregivers we should strive to communicate  very clearly that this is each person’s right .

 

4.The Power of Faith, Hope, Love and the Human Spirit

 

Martin said his relationship with God calmed him and got him through those ten long years.

“I didn’t have proof that He existed but I believed in Him anyway because I knew He was real. God did the same for me. Unlike people , He didn’t need proof that I existed- He knew I did.” Martin Pistorius

When  Anderson Cooper asked Martin if there was anything he’d like people to take away from his story, Martin said,” I think there is always hope, no matter how small. And also to  treat everyone with kindness,  dignity,  compassion, and respect whether you think they understand you or not. to never underestimate the power of the mind the importance of love and faith and to never stop dreaming.”

 

reat everyone with kindness,  dignity,  compassion, and respect whether you think they understand you or not. Martin Pistorius, Ghost Boy

5. The Enormous Impact of Expectations and Language 

 

The Danger of Low Expectations

 

“So that’s why I stayed inside the box  I’d been put into so long before. It was the one marked with a single word:  “imbecile.” Martin Pistorius

Martin’s doctors’ predictions about his future became his parents expectations. When they were told Martin was “As good as not there. You know, he’s a vegetable. He has zero intelligence.”

His parents believed the labels these medical professionals gave them about Martin’s intelligence even when these same medical professionals said they had no idea what caused Martin’s illness. Dehumanizing language like “vegetable” and “mental age of a three month old” does just that, it dehumanizes people.

His parents expectations regarding Martin’s capability were so powerful that they could not see when Martin became conscious again and was desperately trying to get their attention. For over ten years Martin tried to move his body, his eyes, to nod  to show them his brain was working like theirs, but they could not see it. These expectations and labels followed him everywhere and he became invisible to those around him. He was “watered, wiped, and cleaned- but never really noticed”.

 

Low expectations directly contributed to the abuse and neglect of  Martin as well as an enormous amount of self hatred for Martin himself . In Ghost Boy, he describes himself as “repulsive”  and “unloveable”. It’s heartbreaking to read this but vitally important to understanding  just how devastating the impact of  low expectations and dehumanizing language are from the very  people responsible for ensuring  that your most basic needs are met.

To most people, I resembled a pot plant, to be given water and left in a corner.I was called ‘the obstacle’, ‘donkey’ and ‘rubbish’.”

Martin’s father bathed him,dressed him, fed him, and got up though the night to turn him so he wouldn’t get bed sores. He lovingly cared for him and Martin felt that. But,  he also the negative energy and resentment from his mother was equally palpable to Martin. He often heard  his mother complaining to his father about how hard it was to care for him, and that she wanted to send him to a full time residential facility so his  presence would not take away from their two “normal” kids .

Luckily, his father refused.

Martin was sitting in a corner for one of these arguments and his mother looked at him and said “ You must die. You have to die.” And, that’s exactly what Martin wanted to do. He wanted to relieve his  family of the burden he had been told that he was. Although he was extremely hurt, at the time Martin sympathized with his mother for wishing he were dead because he’d heard other parents at the care center say the same things about their children.

Martin now says that his mother did apologize and he I knows and understands that she was doing the best that she could at the time.

“The rest of the world felt so far away when she said those words. She got up and left me in the silent room. I wanted to do as she bid me that day. I longed to leave my life.”Martin Pistorius

While these examples seem unthinkable, how many times do parents or caregivers talk about how hard it is to take care of someone assuming they don’t understand ?

 

The Power of High Expectations

 

 “Virna is the only one who sees me. More importantly she believes in me. She understands my language-the smiles, the gazes, the nods that are all I have at my disposal.”Martin PistoriusJust one person’s positive expectation changed Martin’s life. Virna, the caregiver, who saved Martin from the prison he’d been living in 2000,  did not need one piece of incontrovertible  evidence that proved  Martin was  thinking, that he was communicating . She didn’t require that Martin repeatedly prove his competence before she spoke to him as she would any man in his twenties, and Martin’s world completely changed.

In a recent interview on CTV  Martin said ,”Verna would talk to me as if I understood, almost expecting a response. When she eventually picked up on the subtle signs that I was understanding what she was saying and began to see me, it was amazing, really exciting. It gave me something else to focus on and think about. I think being seen and having another person validate your existence is incredibly important. In essence, it makes you feel like you matter.”

Everyone caring for Martin had a moral and ethical responsibility to treat him as Virna did-  with kindness, high expectations, and respect. She  wasn’t being a saint by treating Martin as a person worthy of dignity and respect, she was simply acting as any human should. Don’t we each have a moral and ethical responsibility to treat anyone  who is dependent on our care as Virna treated Martin?

High Expectations Have A Ripple Effect

 

Virna urges his parents to take him to be evaluated for a communication device and his parents expectations shift dramatically. Even though Martin did not pass that first assessment with flying colors, it was enough to shift his parents expectations. They started believing in him despite the skeptics around him. It completely changed the way they interacted with Martin as well as the opportunities they provided him. Martin’s parents became his biggest advocates once just one person believed in him.

After Martin experienced the love and total acceptance of  his wife  Joanna it helped  alleviate some of the internalized ableism Martin experienced.

 “I‘ve lived my life as a burden. She makes me feel weightless.”

Finally, Martin was accepted for being who he is and the novel reflects a change in the way Martin speaks about himself.

"She accepts me as I am today and doesn't mourn what I once was. What surprises me most is she seems almost uninterested in my rehabilitation. She doesn't push me to do things or raise an eyebrow if I can't. She doesn't want to hear my ‘voice'."Martin Pistorius

Pieces on Martin Pistorius

 NPR INVISIBILIA PODCAST

ANDERSON COOPER INTERVIEW

Daily Mail Article

We’ve listed five compelling reasons to read Ghost Boy, but there are so many more. We want everyone to read this remarkable book and have two copies of Ghost Boy to give away.

To enter make sure you have “liked” Ollibean’s Facebook Page, this post and leave a comment on this post on our Facebook page ( they don’t always show up if you comment on another thread) letting us know why you’d like to read this book. We’ll assign a number to each comment and randomly choose one. Each winner will get a copy of Ghost Boy.We will choose the first winner on February 10th at noon and the second winner on February 14th at noon. Good luck.

Black and white photograph of woman with dark hair and light skin looking at camera. Text reads" Lauri Swann Hunt, Inclusionista committed to social justice, proud mama of three & founder of Ollibean."

About the Author:

Advocate committed to inclusion & social justice, proud mother of three wonderful humans, and part of the team that started Ollibean.

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