“A half-truth is even more dangerous than a lie. A lie, you can detect at some stage, but half a truth is sure to mislead you”.

I am infuriated with the pure ignorance of people, their unwillingness to learn or realize what they are believing and claim to know about disability, as non-disabled people are narratives created by those, like themselves, who are not in any way disabled. Without interacting with the community of disabled people directly and without acknowledging or realizing you are on the outside edges of it as professionals, caregivers, other support people, teachers, parents, siblings, extended family, and other community members, the only purpose you are serving is to harm! This may not be the intention or done as a way cause to harm disabled people, but that does not change the reality that it is harmful. To quote Anurag Shourie, who does work in the medical field, from his book Half A Shadow comes “A half-truth is even more dangerous than a lie. A lie, you can detect at some stage, but half a truth is sure to mislead you”.

Over the last several years during the pandemic, many messages and narratives have come from it as a way or means of protecting or supporting disabled people, but are truly harmful, even damaging. I was left feeling extremely fearful of non-disabled people. But equally as fearful of being present in and taking up space within the community where I belong. I understand that it is a hard concept for people to grasp when disabled people state that we are the largest marginalized minority and how that might be painful for other marginalized minorities. How difficult is it to realize that when you add a disability to something it makes things different in comparison to the abled experience? It is a double form of being a minority and marginalized when there is another aspect of the individual that belongs to another marginalized and/or minority group. It doesn’t matter how much you don’t understand it the reality doesn’t change! If you really think about it within schools, grocery stores, churches, other places of worship, in movies, and on television, as non-disabled people, you know you don’t see as many people with disabilities as you do abled people. Plus, there is the reality that this is based on aspects of disability that are visible, and you aren’t counting people with invisible disabilities, even accepting them more so as part of your population than you do people with disabilities that have visible aspects to them!

Living in a world where everyone has been thrown online as a result of the pandemic has been one of the most difficult challenges

Living in a world where everyone has been thrown online as a result of the pandemic has been one of the most difficult challenges I have ever faced. Instead of abled people embracing the opportunity they had to engage and learn from disabled individuals, many clung to their beliefs about disability that a society that doesn’t, and frankly doesn’t want to, include us create. They may have unknowingly followed or been followed by an individual with a disability who shares similar thoughts, opinions, and perspectives to their own while completely ignoring the reality that it is due to the fact that, regardless of a disability, we are all still humans and as humans, we are all different. Without this realization, when fighting for social justice and human rights issues people indirectly caused harm and pain to disabled people by not considering or discussing aspects of disability with the larger contexts of human rights and social justice. In turn, this created further separation and othering of disabled individuals from all other people. Every time a new hashtag came up for a minority and marginalized group right behind it came one that was specific to and created by those with disabilities. Disabled people doing this resulted in attacks by abled individuals as if disabled people were minimizing their efforts when disabled people, and the specifics in relation to themselves, were being ignored. Occasionally, some things that disabled people were saying online were noticed by abled people. Instead of being looked into and studied these things were being twisted to fit a narrative that they created to align with what society has always taught them about disability.

Advocacy online is an accessible and important way for disabled people to connect. Social media spaces make our voices louder about issues that concern and impact us, whether or not they are the same ones that impact everyone else or are specific to ourselves due to our disabilities. It’s always been done and isn’t anything new for those of us with disabilities. That is not the same reality that is experienced by those who are not disabled, who were thrust into doing advocacy and other work online as a result of the pandemic. One truth remains unchanged, and that is living in a disabled body in a world not designed for you, regardless of the color of one’s skin or any other factor, is a challenge. A challenge that is not faced or experienced by those who are not disabled. The U.S. is known for being a melting pot of people, cultures, spiritual and religious backgrounds, self-expression, and identities. In and of itself, the disability community is that same melting pot but expands beyond the U.S.. We fight for what is right and just, and all have varying views on what is right or just based on many different factors. Just like any other human, disabled people also forget that because of such borders, all things don’t work the same for all disabled people. The one thing we don’t do is stop the fight because it’s outside of our borders. The U.S. is such a powerful country that disabled people can’t afford to step back waiting to see how it plays out because we are painfully aware that any injustice toward disabled people that is normalized or accepted in the U.S. is soon likely to be adopted by the countries we live in.

Over the last several years, mainstream media has torn apart and made stories out of disability-related hashtags. In the process, mainstream media have taken it as far as to tear many disabled people to shreds by attacking their personal social media accounts, where these people are choosing to share their lived experiences to educate and support others like themselves. Its been a long, and continued fight for disabled people, in the area of representation and inclusion, in the media. Many have gotten to the point where they feel any representation is better than none at all. Some have chosen to fight for the inclusion of disabled people to be represented in a way that doesn’t center around their disability. Others choose to highlight the issues of tokenism and inaccurate representations of disability in media. All of those aspects of the same thing are very valid! A problem arises when non-disabled people insert themselves, especially when they are public figures, who fail to realize they are misinformed. They fail to realize that they are not getting the full picture of a situation when they pull something said by a disabled person or group online. It becomes an even bigger issue when choosing to speak on or challenge it, or people who they feel they have an influence on.

Last night a YouTuber with a disability, who I frequently watch and enjoy, uploaded a response video to another video they had seen of a non-disabled person totally degrading disabled people. To make it all go better the individual who was doing this is also part of a minority group that often faces oppression and discrimination. It was evident to me that what the person was trying to do was highlight tokenism but it was clear that as a non-disabled individual, they didn’t understand what tokenism even was. It was also evident from a few choice words that she decided to spew out of her mouth that she, like many abled individuals, has no time for or interest in seeing disabled people alongside non-disabled people participating in the same way as their peers. She very clearly sent a message that disabled people should be hidden and only belong in certain spaces. Evidently, she has seen, an ad campaign somewhere of a person in a wheelchair modeling an underwear and bra set, for a website that sells such items. This image repulsed her and she felt that she shouldn’t have seen it. She then continued to try and prove her point that it wasn’t representation claiming that representation shouldn’t be that important. Clearly, any disabled person listening to her knows that she doesn’t see disabled people as attractive and sexual beings but merely sees their need for a bra and panties the same as anyone else’s.

PSA: Trying to do good for the disabled community as a non-disabled person can do more harm than it does good to the community as a whole! Please understand that many mainstream narratives were never developed by individuals with disabilities and many of us have to fight them regularly.

While nobody with a disability can or should be denying the reality that tokenism is a problem and does exist this individual’s whole point derailed because the items that were being modeled by an individual in a wheelchair were adaptive clothing meant for those with disabilities. To make it all go better they were on a website that mainly had models who were of the same minority group as this person.

NEWSFLASH: DISABLED PEOPLE COME IN ALL SHAPES, SIZES, SKIN TONES, GENDER IDENTITIES & EXPRESSIONS, AND BELIEF SYSTEMS AS NON-DISABLED PEOPLE DO.

While the YouTuber who put out the response video suggested that people look into the content that her response was in reference to after seeing the clips that I did I had no desire to give this individual views and thus support for what she put into the world. What I did want to do was check out the clothing line and the website that was mentioned. I searched Google for the line and the brand and saw the exact same ad that was featured in the segment piece. Upon clicking on it I was directed to the website and was pleased to see that in comparison to the pricing of the other items these were at a reduced price. Rather than returning to Google to find the rest of the items, as anyone would, I went to the search menu to see if there was a section for the adaptive items, and there wasn’t which at first made me feel good as it came across as being inclusive. I was saddened to discover that not only was there not a section in the main menu for the adaptive collection, but the clothing items intended for those with disabilities were not included in the sections where similar items appeared. That is indeed an example of tokenism. Tokenism isn’t something that is an obvious form of oppression or discrimination from the perspective of a non-disabled person. Overall the site didn’t appear to be accessible. Without the direct website links to the adaptive wear, it’s not likely to be found by people who would be looking for it. Many people would conclude from my previous statement this person was indeed correct and in fact RIGHT, in her viewpoint. Unfortunately, because of several statements, she made she proved herself to be ableist and dared to push back against it when disabled people brought this to her attention.

I’ve long seen the issue coming where non-disabled people would end up attacking disabled people from sheer ignorance of not understanding disability. I refuse to accept the way non-disabled go about seeing those with a disability the same as them because they are the same color, religion, physical location, share an aspect of themselves not specific to disability, or any other factor they choose to see as making us the same. That mindset can only serve to harm us through spreading misinformation, neglect, and even abuse. I’ve said something more than a few times over the last few years, but I see the need to say it again. Being disabled is a completely different lived experience from being able-bodied. None of the external factors people like to use to counteract that will ever change it. If you are someone with a desire to truly support and advocate for disabled people, whether or not you are disabled or abled, it is important for you to educate yourself on issues that are specific to disabled people and to realize that a lot of things only apply to certain parts of, or disabled people, and don’t to non-disabled people.

Guest Post Disclaimer: Any and all information shared in this guest blog post is intended for educational and informational purposes only. Nothing in this blog post, nor any content on CPTSDfoundation.org, is a supplement for or supersedes the relationship and direction of your medical or mental health providers. Thoughts, ideas, or opinions expressed by the writer of this guest blog post do not necessarily reflect those of CPTSD Foundation. For more information, see our Privacy Policy and Full Disclaimer.

Destiny Mowadeng

Hi, my name is Destiny and I am a Certified Tauma Recovery Coach. I have a disability called Spina Bifida and I am also a trauma survivor. As I am not a person who particularly likes face to face interaction my writing is a vital part of what I do for my own mental health as well as professionally. Being a person with a disability has developed into coaching those who are also survivors of trauma and are disabled similar to myself. I do this using a virtual reality platform called Second Life. I also own a website and blog to help advocate, education, and rise awareness about disability, mental health, and trauma within the context of disability.

powerfullypowerless.wordpress.com/

When you look at patterns within dysfunctional family systems, without fail, you will find the hallmark of a false narrative. The engine of the family system runs on untruths, half-truths, and constructed reality. And it doesn’t start where your story begins. It starts with the stories of your parents. 

Abuse flourishes in the fertile soil of past abuse

My parents grew up in similar systems to mine and in many cases, even worse. My parents had the inability to be emotionally available. That may be the understatement of the year. They were totally checked out, unable to meet even the most basic emotional needs of each other or of their children. Even friendships were affected. It screwed up every single relationship in their lives. 

They did not know how to express love or encouragement. They did not see their children as separate people with opinions, talents and hopes and dreams. My parents acted out of what they knew. Lest you think this is an excuse for the behaviors they CHOSE, let me absolve you of that notion. I am simply looking at the pattern of a false narrative that grows from the seeds of abuse.  

My father was the third child in a huge family of twelve. Born at an awkward time in history, he was too young to serve in World War II and too old to be a part of the cataclysmic changes of the 1960s. This small slice of Americans born in the years after the depression, but before the war, were known as the silent generation. That is an apt description. My father was full of simmering, silent rage. It was the way he dealt with problems. A small conflict would turn into a slow boil.

My mother was usually the one who turned up the heat by dropping sharp comments here and there. Things would escalate into a blistering argument as her comments turned into a steady stream of emotional and verbal harassment. Finally, my father would explode—effectively shutting down any and all opposition. Both parties would retreat to their corners and silence would reign supreme. My brother and I hid during these painful engagements. We knew that after a few days, the silence would dissipate and the usual routine continues, at least until the next round. In my house, any expression of emotion was dangerous. We learned that lesson very early, but my father learned it first from his own family of origin.

I held the pinwheel up and watched as the breeze spun its wondrous colors so fast they turned into a blur. The whirring sound was comforting. I tried to offer it to my brother, but he just shook his head. 

“That’s all right. You keep it.” I sighed and continued to watch as the pinwheel spun on its tiny axle.

When we arrived at our grandparents, the cousins ran out to greet us. There was a gaggle of five that were all about the same age. We were the children of the oldest siblings and spent many hours together. My grandmother had made a big pot of vegetable soup and we all trooped into the house together. 

My father and his brothers started joking the second we arrived. “Y’all remember how many chiggers we used to get growing up?” (Chiggers are similar to ticks.)

“Man,” said Uncle Devon. “We were covered with those things.” 

I had never seen a chigger but often heard my father talk about them. I had heard him talk about a lot of things. As he related the stories of his childhood over the years, he saw himself as Tom Sawyer enjoying exciting adventures. Much later, I realized they were stories of abuse. 

How my father could continue relationships with his family as if all the abuse were just a normal part of growing up is beyond me. People accepted things that should not have been accepted and created a false narrative in order to live with it. 

“We got boils from all the nastiness of our house,” my father said. “I used to get them on my neck and had to have them cut open.” My father actually laughed when he told me this. “By the time I was ten years old, I was on my own so I got odd jobs around town and bought all my own clothes and anything else I needed. I only came home to sleep. I made sure I was gone early in the morning.” These were stories of my father’s “independence” and proof of how special and amazing he was.

Then, there was the violence. “Daddy had a gun he would shoot in the air whenever we got on his nerves. It didn’t take much to set him off. Sometimes, he would knock you out just for coming into the room. By the time we were teenagers, we spent most of the spring and summer sleeping out in the woods. When it was really hot, we slept on the roof.”

The chaos, emotional detachment, and violence of his home encouraged more abuse from the older siblings. “As kids, we used to walk across a train trestle daring each other to make it before the train appeared. (You would be killed if a train came. The trestle was hundreds of feet high.) Jeremy, hung me over the side by my feet one time. I was sure he was going to kill me.” He told this story with hilarity, but underneath, I could feel his rage. He and Jeremy had never gotten along.

My brother and I laughed right along with the rest of the family. Looking back, the whole thing sounds like a Dickens novel, but at the time, these stories were told as acts of bravery and derring-do. 

In addition to all this, my father was born with profound physical disabilities. Born at home, in a time before antibiotics, he developed an eye infection that took his sight in one eye. He was also born with a hernia which his parents never bothered to fix. As a child, he was forced to wear a truss to keep the damage from spreading. He lived his entire childhood like that until in college, he paid for the hernia operation himself. 

My Grandmother was a carrier for a neuro-muscular disease called Charco-Marie-Toothe syndrome. It causes muscle weakness, atrophy, and chronic pain. I also have the disease, so I know from personal experience how difficult it is to deal with. He told me as kids, his father forced him and his brothers to stand at the end of a giant band saw and catch lumber as it flew off the belt. Besides being life-threateningly dangerous, just thinking about this poor, skinny, disabled kid being made to stand for hours catching heavy lumber makes me want to sob. It was insanity.

Despite all this, we made the trek to go see my grandparents on a regular basis. No one ever brought up the past except to laugh or brag about it. My grandparent’s marriage was the classic example of an extremely narcissistic and violent man married to a passive enabler. Emotional depth and empathy did not exist in my father’s family. They would have been a liability to survival.

The most astounding thing was the false narrative that grew up around it. Nobody called my Grandfather out for his abuse. In fact, no one ever told the truth about anything. It is no wonder the family my father created would be filled with so much sorrow. He got it honest— as they say in the south.

This brings me to the present. My father’s life is a classic example of childhood with such deprivation and violence, it created deep and lasting scars that turned into narcissistic wounds. By the time he got to me, there was no reaching him. His true personality, sense of humor, and curiosity about life were lost. His many talents and great business sense only fed the anger of the lost little boy inside. I knew all these things about my father and at times, I experienced his good qualities. But none of that made any difference in his abuse of me. In fact, my own empathy was used against me.

I could not reach that broken little child inside him and I shouldn’t have tried. He had made a choice to rule the world like a god and he was going to have it that way come hell or high water. He was going to have it that way, even if it destroyed the people he wanted to love the most. 

My father created a false narrative about himself, the world, and about our family. He created a false narrative about me and it followed me almost my entire life. I was deathly afraid of him; afraid to believe I had any worth, afraid to try, afraid to live. I was trash. He told me so. He treated me that way. These false beliefs run deep and must be faced as a part of the healing process. The child inside me longs to be loved and will do almost anything to have a relationship with a parent. Even to the point of putting up with abuse and believing a pack of lies. 

I want to caution anyone who has had to deal with a narcissistic parent or a narcissist of any kind. While narcissism exists on a spectrum, if you have felt the confusion, despair, and frustration of trying to deal with such a person, you understand what I’m talking about.

No matter how much you love them, no matter how much you would do anything to get them to understand—YOU ARE POWERLESS TO CHANGE THEM.

You are playing with fire if you continue to try. It will destroy you. The narcissist will sit at your funeral and say, “I have no idea why Rebekah was so depressed. Isn’t it a shame she was just like her mother?” And my father would believe every word to the depth of his soul.

People make choices in life. The greatest gift you can give a loved one is to honor the choices they have made and move on with your own life. When you accept narcissists for who they are and begin to build a life apart from them, you will know you are making the steps you need to heal.

To defy trauma is to see the truth. To embrace joy is to live it out.

Guest Post Disclaimer: Any and all information shared in this guest blog post is intended for educational and informational purposes only. Nothing in this blog post, nor any content on CPTSDfoundation.org, is a supplement for or supersedes the relationship and direction of your medical or mental health providers. Thoughts, ideas, or opinions expressed by the writer of this guest blog post do not necessarily reflect those of CPTSD Foundation. For more information, see our Privacy Policy and Full Disclaimer.

Rebekah Brown

Rebekah Brown, a native of the south, now resides in the Great American West. Surviving a complicated and abusive family system makes her unique writing style insightful as well as uplifting. Rebekah is the proud mother of two and grandmother of four.

One particular image from a family album that I will have forever burned in my mind is of my grandfather when he visited Ireland and kissed the Blarney Stone. I’m not sure I understand the concept completely, but to visit there seems like a rite of passage as it is a location that is highly regarded and somewhat sacred that people go to kiss the stone. In the picture my grandfather is laying with his back to the ground, the upper half of his body leaned into a hole where he then leans up over a rock wall to kiss the stone. Disability aside, that seems like an awful lot of work and a very awkward position to get into just to kiss a rock! Nonetheless, it is something that I clearly wouldn’t be able to accomplish which makes me feel a little less Irish because of my inability to do so.

Growing up I was a member of the local girl guide troop. During one of the meetings, as part of some badge work, we invited a teacher who taught our group about the traditional dances from our province and how to actually do a few of them. It is really challenging to include someone in a wheelchair in a dance that involves a lot of movement within a space when that space is very small, and there are many twists, turns, and fancy footwork. In such situations, I preferred to sit on the sidelines watching, but there never seemed to be a polite way to say it. Being involved, while people awkwardly tried to include me, was extremely uncomfortable.

Those with disabilities are part of the largest minority and marginalized group in society. We are typically born to parents and exist within families where there are no other disabled people or disabled people with the same type of disability. Genetically and generationally, by all accounts, I am of Irish descent, but with traditions that are highly valued being inaccessible, plus the reality that I am one of two members in my family with a disability holding Irish as a part of my identity is not something I feel deeply rooted in, or connected to. Something less acknowledged and often undermined, not being seen as something that is real, is that a disability community exists. Many of us feel the same way toward it as we might toward our generational and genetic heritage. A few of us, like myself, might feel more deeply connected to the disability community and culture than we do our genetic and generational heritage. I think it’s a difficult concept for people to grasp because they often view disability through the medical model which sees it as a condition. The only parts of the community that they get to see are connected to rights and justice, which they don’t consider part of their history, identity, or heritage. This creates questions of legitimacy resulting in not seeing the value and importance, or realness of it. Unfortunately, this results in a lot of attacks based on fear and not understanding, which comes with a whole other set of challenges for the community.

For myself, even though the disability community is advocacy based, mainly existing because of the importance of fighting for the rights and justice of disabled people, it is a far more comfortable community to belong to as within it we aren’t the only ones. It’s a place where we are valued and accepted. As much as I might enjoy many things that belong to my Irish heritage it is more challenging for me and awkward to be part of and identify with. The disability community is equally as rich in culture and history as any other community. I once heard it said by a fellow member of the community, Stacy Park, that our ancestors are the members of the community that came before us. As disabled people, many of us honor and value it, even though it means looking into the past and seeing the horrible things that have happened to people that came before us. Looking at it that way does it really seem any different than any other group of people with any heritage?

Guest Post Disclaimer: Any and all information shared in this guest blog post is intended for educational and informational purposes only. Nothing in this blog post, nor any content on CPTSDfoundation.org, is a supplement for or supersedes the relationship and direction of your medical or mental health providers. Thoughts, ideas, or opinions expressed by the writer of this guest blog post do not necessarily reflect those of CPTSD Foundation. For more information, see our Privacy Policy and Full Disclaimer.

Destiny Mowadeng

Hi, my name is Destiny and I am a Certified Tauma Recovery Coach. I have a disability called Spina Bifida and I am also a trauma survivor. As I am not a person who particularly likes face to face interaction my writing is a vital part of what I do for my own mental health as well as professionally. Being a person with a disability has developed into coaching those who are also survivors of trauma and are disabled similar to myself. I do this using a virtual reality platform called Second Life. I also own a website and blog to help advocate, education, and rise awareness about disability, mental health, and trauma within the context of disability.

powerfullypowerless.wordpress.com/

You still don’t see me, not really.
You know I exist.
Yet, I am never fully visible.

You are glad I am not your problem to deal with.
You are glad you don’t have to deal with all that is involved with someone like me.
You run to hold that door when you are not within close range.
You go out of your way to smile asking me how my day is.
You are quick to comfort me.
You think you safely assume I don’t understand the world around me so you can speak whatever under your breath and I won’t notice

Why?

To you, I am a burden.
To you, I am too much to deal with.
To you, I am weak and unable, the one you must help, guide, correct.
To you, my life is one of struggle and suffering.
To you, you see a life that could never possibly be happy or worth living.
To you, I am a drain on the system.
To you, I am less.
I am not human.
A useless piece of junk that you turn away from.
You wish I would hide so you don’t have to face me.
This is your world.
How dare I disrupt it.

Do you even pause to consider me?
Nope.
Forget being asked how I may feel or what I may think.
It’s much easier to just control the situation.
It’s much easier if you tell me what to think, how to feel, and to anticipate what my wants and needs are.

Dare I try to speak? Hell No.
I must let you rescue and protect me.
You know better.
You know what’s best.
You know what’s right.
You are ABLE.

I belong to an exclusive club that all may become a part of. The club welcomes all no matter what.
This exclusive club is different than any other club. This club is one that once you belong there is no way out. In this club, we are not connected by color, identity or orientation, shared thoughts, or beliefs whether or not we are spiritual or religious. The connection shared here is the one thing that forever makes us different from the rest of the world and the one thing we have in common.

We roam among you having you insisting on providing hidden spaces just for us. You talk about accepting differences, representation, and being inclusive of ALL. It’s obvious you truly don’t know what that means. When you talk about inclusion you are talking about including those that are like yourself. You want to include the able people and still disregard me.

I am white. Just like you.
I am black. Just like you.
I am a Christian. Just like you.
I am, Non-Christian. Just like you.
I am trans. Just like you.
I am gay. Just like you.
I am a lesbian. Just like you.
I am pro-life. Just like you.
I am pro-choice. Just like you.
I am Italian. Just like you.
I am French. Just like you.
I am English. Just like you.
But, I am also disabled.
That changes everything.

To see a representation of myself means seeing someone in a wheelchair or scooter. To see a representation of myself means seeing someone using, crutches, a walker, a cane. I am mobility impaired.

To see a representation of myself means seeing someone with a prosthetic limb. I am an Amputee.
To see a representation of myself means seeing a guide dog user, someone being guided using a sighted guide, or seeing someone using a white cane. I am blind.
To see a representation of myself means there are visual cues. It means using sign language or technology to communicate with me. I am deaf/hard of hearing.

When a white person attempts to represent someone in the black community we question whether or not it is appropriate. When a black person wants something or someone that white people have and adapts it to themselves we call that deserving of seeing themselves. When a disabled person wants representation we label it a liability issue. What I get to see is able people “playing at” being me. None of it is right or fair and someone always ends up hurt.

Your version of inclusion is different from mine. It doesn’t include me. For me to be included:

Every space needs to be larger to accommodate moving in a wheelchair.

Doorways and hallways need to be wider.

Bathrooms and stalls need to be larger.

Things need to be on tables low enough for me to reach and high enough that my knees can fit under.

All paths must be clear of any obstacles as this traps me and I am unable to move, may get injured, or fall. I am mobility impaired and my safety is at stake.

I require things in audio format. I require a larger text that is easier to see. I require an alternate color paper to prevent glare and light sensitivity. I am blind

All materials must be captioned or provided in a text version. I require visual signals and sign language or lip reading. I am deaf.

There are so many things I need in order to be able to take part, NOT just to feel included or prevent me from feeling left out. For me, inclusion is a must. It is a NEED. It is NOT something that should be taken lightly and is something that has a long way to go. It never should be something that is mocked.

The connection and bond of disability is complex. There is always a twinge of survivor guilt when I have survived something that a fellow person with a disability has not. There is always a sense of loss and grief that comes with hearing about someone that has lost their life when they are younger, around the same age, or has a similar disability to my own. There is always a battle with anger when an injustice has been done to a fellow person with a disability.

I don’t stop to think “oh that person is black so they aren’t like me” because THEY ARE.

I don’t stop to think “oh that person as gay, trans, lesbian and I’m not so it’s different.” IT ISN’T.

I don’t stop to think “oh that person isn’t a Christian so they are evil or they are a Christian and I’m not so they don’t matter.” IT MATTERS.

I won’t mention all of these things to toot my own horn or attempt to come across as better than anyone else. I merely want to point out that I am deeply impacted by something that many have the privilege of never having to understand. For you, there has to be some level of personal connection to a situation or a person to feel an impact. I hope the pain I know is something you never have to face.

All there is left to do is sit here on Planet Alien waiting for the world to catch up to what I need to belong in order to be a part of the human race because you have made it perfectly clear and painfully obvious that you aren’t ready yet.

Guest Post Disclaimer: Any and all information shared in this guest blog post is intended for educational and informational purposes only. Nothing in this blog post, nor any content on CPTSDfoundation.org, is a supplement for or supersedes the relationship and direction of your medical or mental health providers. Thoughts, ideas, or opinions expressed by the writer of this guest blog do not necessarily reflect those of CPTSD Foundation. For more information, see our Privacy Policy and Full Disclaimer.

Destiny Mowadeng

Hi, my name is Destiny and I am a Certified Tauma Recovery Coach. I have a disability called Spina Bifida and I am also a trauma survivor. As I am not a person who particularly likes face to face interaction my writing is a vital part of what I do for my own mental health as well as professionally. Being a person with a disability has developed into coaching those who are also survivors of trauma and are disabled similar to myself. I do this using a virtual reality platform called Second Life. I also own a website and blog to help advocate, education, and rise awareness about disability, mental health, and trauma within the context of disability.

powerfullypowerless.wordpress.com/

In early summer 2021, a call for participants to interview for a book project on dissociation appeared on my Facebook. The book is called Dissociation Made Simple written by Dr. Jamie Marich. As soon as I saw the call, as an individual with a physical disability, I KNEW I had to take part. Having followed the work of Jamie for years plus getting to know her as an individual, I was confident that my voice in the book would not become part of advertising simply because I was someone disabled doing something completely normal that really had nothing to do with being disabled. However, being disabled, I felt would offer a unique voice and perspective in the conversation to end the stigma around Dissociation and related disorders.

Admittedly, I’ve only had two personal encounters with anyone with DID and both were online. Unfortunately, one encounter involved someone bringing to my attention that they suspected I had DID, then accusing me of faking alters because “alters can’t possibly switch as much” as this person thought I was. In hindsight, what might have been happening is someone was noticing something that I was trying to ignore and push away, causing what appeared to be switching. Needless to say, my view and understanding of dissociation are somewhat limited and mildly terrifying, especially prior to any form of therapy for my own trauma. As I say that, I’m reminded of one particular conversation that sticks out in my mind when being asked by a friend if I knew what dissociation was. I responded “NO, why? Am I supposed to?” They replied, “Interesting, you just gave the textbook definition.”

BACKSTORY

As a survivor of childhood trauma diagnosed with CPTSD, I was familiar with dissociation as a symptom of the larger diagnosis but never explored it much beyond that. Bringing up or trying to relate things from your trauma to your disability with an abled therapist is a challenge, especially considering my disability is from birth. Such forms of disability are often viewed as just life rather than recognized as something traumatic, more often than not resulting in having them seen as something well-managed. For this reason, I never brought up anything about my disability or how I felt it crossed over or intertwined with my other trauma in therapy, as it always left me feeling dismissed and invalidated. This meant that a large part of my trauma, understanding it, and myself felt impossible, leaving it unaddressed. I always looked at my dissociation as being similar to a sneeze while having a cold. It’s impossible to get rid of the sneeze without getting rid of the cold, so it was impossible to get rid of dissociation being diagnosed with CPTSD. Yet, I frequently used the language of “part” when expressing what I thought or felt. Dissociation was definitely more than blanking out, confusion, flashbacks, losing time, or a symptom.

Fast forward a few years to when I met and began seeing a trauma-informed coach. For the first time, I felt comfortable enough with someone to bring up my thoughts and feelings about certain aspects of my disability in the context of my other trauma. I had finally gotten to a place where I was able to talk about having an imaginary friend as a child, but unlike what would be considered typical, I had her for much longer than an average child would. PLUS, this imaginary friend was an ADULT, based on a character from a favorite tv show. I always wished she would come to play with me and take care of me. My coach explained this as my way of creating what I needed to feel safe, loved, and cared for. Her being familiar with my having several different accounts in second life, a virtual reality platform, she had me begin exploring my avatars as parts, which I have always viewed as extensions of myself. It made sense that they were part of me as they all look, act, feel, and express differently from each other and from the body, even though when creating them I had no idea why they were refusing blonde hair and blue eyes instead insisting on brown or different colored eyes, as well as brown or black hair. What I had never done before this was teasing apart their function in my life and what they were giving me that I longed for and needed. Once I began coaching training, my relationship, as a client, with my coach changed as she was the instructor of the program. It wasn’t until I had begun to explore external and internal family systems in the training that I dove deep into the process of understanding those things within myself. Sometime after, I started seeing another coach who was familiar with parts using the IFS framework. During that process, I discovered a new part that first appeared as a very angry teenager who scared the crap out of me by exploding into a ball of fire. As a result of how badly it scared me, she went into hiding for some time after (until we started working through the book). Also, at this time, I was finally able to admit that I was aware of at least one infant part but didn’t know how to identify an infant as a part because they weren’t fully fleshed out. I have to admit, that as much as the framework for IFS can be helpful in understanding parts of one’s self and their system, some IFS language can be problematic. Clearly, the idea of an angry part or an infant part was not enough of an identifier. I could never figure out why and didn’t give it much thought but referring to myself in that way felt bizarre!

FAST FORWARD TO THE INTERVIEW PREP/INTERVIEW

Between the time I reached out offering to interview and the day of, we had been given the questions. Knowing the questions beforehand gave me time to prepare answers, making everything flow in a way that made sense. That process led to the realization that, eventually, I may need to write my own book. As I have always done, I turned to my writing to help make sense of my thoughts and feelings as I was working on the questions preparing for the interview. Finally, the day came, July 1st, Canada Day, Jamie and I met for the interview! Going into it, despite realizing there was no need to be, I was a nervous wreck. Jamie made me feel relaxed and comfortable which allowed me to talk about my experience very candidly. I shared things that I hadn’t with anyone before. Someone finally heard what I had been holding onto inside. The better part of it might have been having someone hear all of this and them not losing their mind over any of it. What a sense of relief!

Some time passed, and I believe it was early in the new year when we got the rough draft of the book to review. As I suspected, as if I had written it myself, the interview that happened months prior was exactly what was in the book. I don’t think it was until then that the realization that everything I had shared was out in the world for anyone to see sunk in. After that, I knew I could no longer ignore the ways and impact of dissociation on me as a result of my trauma.

THE WORK BEGINS

I’m that client who can give you my entire trauma history, never batting an eye or showing any emotion toward it as if everything happened to someone else. One might think of this as no longer holding any emotion toward it. I realize that feeling nothing toward it means I am disconnected from it. In many ways, it feels like it didn’t happen to me. Because of the gift of dissociation, it didn’t.

I am not sure if anything could have prepared me for the journey I was about to be taken on when working on the exercises from the book. Having the basic footing for my parts already laid made me feel comfortable and confident that I would be ok doing the work. I already know there is Des, Aspen, Angry Teenager “bratty” AKA BeeJay, the imaginary friend AKA Shylowe, and an infant AKA Fortune. BeeJay, Aspen, and Destiny already being externalized through second life meant I knew what they looked like. Prior to working on a parts map, as an exercise from the book, I didn’t have a grasp on what Shylowe or Fortune looked like. Once I had acknowledged I was we and knew what we looked like there was no turning back. Each exercise from the book evolved into what the exercise was and more, each one revealing so much and helping us make many needed connections with our lived experiences as we went, hoped for, and expected. Up to this point, there are three poems written which weren’t part of the work. The most eye-opening awareness came recently when a poem just had to be written about us seeing ourselves in a mirror throughout our life, questioning if it indeed was us, and denying any possibility that it might be. For us, having different eye colors has often caused us to double-take our reflections any time we look in the mirror, which can be a super rare occurrence as a wheelchair user due to inaccessibility. Another interesting thing that happened was while developing the playlist, coming to the realization of just how many songs I listen to that reference “we” and a second playlist evolved. On top of that, there was a huge Ah Ha moment that came when we realized who Shylowe was after listening to Neil Diamond’s song Shilo which is a song we often listen to when we feel alone or lost and confused. Now I understand why I have several different colors I claim all to be my favorite, several different favorite types of music I like, several different favorite animals, and several different favorite foods. For my entire life, I’ve been a part of something bigger than one.

At some point during our exploration, once we discovered at least 6 of us, when sharing the map with Jamie, starting a conversation with them came up. How do you talk to an infant and at least two more young children? They start giving you simple phrases and pictures! The parts map at this point can only be explained as a visual trauma timeline. After sharing the beginning of that process with Jamie, little by little more things came out creating the connection between what were two very different experiences of trauma woven together to make a complete picture. After that came an internal battle over what exactly was the trauma. Some of us thought only the abuse counted and saw the disability-related things as just life, while others felt the disability-related trauma things were the most painful. Even though I suspected those things to come up it was painful to have parts of myself reveal the answers to questions we had long been seeking answers for. Yet, engaging in this work, in so many ways, helped us to resolve some aspects of our trauma that we knew about but didn’t know how to go about processing and healing.

My heart breaks, knowing that there have been parts of myself suppressed, and ignored for so long. It’s still a process of getting to know each part of us, and what we went through/who we are. A process that I now embrace rather than try to shove away or resist, knowing that doing that only causes more pain. When you make things simple it truly makes the biggest difference and has the greatest impact. I am not the same person that I was prior to taking part in this project, and I can honestly say I really don’t want to be.

Guest Post Disclaimer: Any and all information shared in this guest blog post is intended for educational and informational purposes only. Nothing in this blog post, nor any content on CPTSDfoundation.org, is a supplement for or supersedes the relationship and direction of your medical or mental health providers. Thoughts, ideas, or opinions expressed by the writer of this guest blog do not necessarily reflect those of CPTSD Foundation. For more information, see our Privacy Policy and Full Disclaimer.

Destiny Mowadeng

Hi, my name is Destiny and I am a Certified Tauma Recovery Coach. I have a disability called Spina Bifida and I am also a trauma survivor. As I am not a person who particularly likes face to face interaction my writing is a vital part of what I do for my own mental health as well as professionally. Being a person with a disability has developed into coaching those who are also survivors of trauma and are disabled similar to myself. I do this using a virtual reality platform called Second Life. I also own a website and blog to help advocate, education, and rise awareness about disability, mental health, and trauma within the context of disability.

powerfullypowerless.wordpress.com/

This is a concept on everyone’s mind at certain times of the year. During the holiday season especially it can be a concept that creates a battle of wills for many with a year ending and another fast approaching. Being both disabled and a survivor of many types of abuse in childhood starting over fresh is something I’ve become a bit of a pro at doing. I’m certainly no stranger to the concept!

My fresh starts were not always limited to the holidays. In my case due to surgeries that often left me unable to do things that I once could or a lengthy struggle to get back to a place close to what once was the harsh reality that it was never going to be 100% possible in all situations felt pretty consistent. This developed what seemed to be a never-ending loop of letting go of or redefining who I was or had now become. Always starting fresh and learning how to navigate the world in a whole new way.

I was born with a birth defect called Spina Bifida which simply put means the spine split or divided and for each living with Spina Bifida depending on which subtype means the effects are greatly different. In my case, that means I’m currently confined to a wheelchair but that wasn’t always the reality. I am paralyzed from the waist down with limited mobility in my legs as well as no feeling or control over bodily functions requiring the help of an assistant for dressing, bathing, and some other daily living chores.

Until the age of ten I was able to walk with the assistance of a walker or crutches and throughout most of my childhood several different types of bracing. It all changed when my curved spine caused concern for my life and needed to be corrected with a rod. During that hospital stay, I had a friend of mine in as well battling a brain tumour who unfortunately lost her life. Unaware to me at the time she passed away the day following my surgery but it wouldn’t be told for several weeks once I was able to be out of bed. Though it would be years and way into adulthood before making the connections it was during that time that the abuse and my disability intertwined itself one became the belief it caused the other. Cementing me in what I know today as CPTSD. It was the “fresh start” that changed who I was and would become.

Facing the reality of my situation at such a young age was for me something that was part of my world but looking back now I realize something no child should have to face and surely wasn’t part of any form of a typical upbringing. Having an understanding of CPTSD that I now have also brought with it the awareness that my disability and medical challenges were enough to bring forth a diagnosis of CPTSD.

My abuse history is way deep and much too long to get into in full detail in one article. But it’s also too great not to mention the impact it has on me and who I am. The awareness that I was abused came at around age 15 when the bathing and bathroom help required by my disability was still being done by my father. Most people are probably cringing at this point thinking OK WTF and you are totally right. That in and of itself was totally messed up and wrong. My awareness that it was abuse came around that time because the touching and fingers in places they don’t belong now had sensations they didn’t have before and were unwanted (trust me as a child I didn’t like it nor want it either) but it was the icky feeling I now had that made it abuse for me. The truth is it was all along.

Many people who haven’t been through it are quick to ask the question why didn’t you just do… Remember I am physically disabled and confined to a wheelchair. I’m here to tell you everything in me wanted to run, scream, escape but here comes another word often looked at as bad…brain wants to run and the body goes “wait, you CAN’T” your not going anywhere!!!

The thing is most of my experiences were so well hidden or “just part of my life” not always violent, that one would even likely argue if they were abusive or not. I still have moments where I wonder but my body reminds me of floods of emotion, sensations, and urges to hide or escape that its all the proof needed.

This time of year when one is ending and a new one approaching id like to encourage those who have the joy of experiencing those as positive things to stop for a moment and consider those whose experience is nothing at all like yours. The battle they face with a fresh year and a fresh start with all it could mean for them. Change and starting over isn’t always equal to experiencing joy or excitement. Those things for me bring forth much frustration, heartbreak, and hurt.

Destiny Mowadeng

Hi, my name is Destiny and I am a Certified Tauma Recovery Coach. I have a disability called Spina Bifida and I am also a trauma survivor. As I am not a person who particularly likes face to face interaction my writing is a vital part of what I do for my own mental health as well as professionally. Being a person with a disability has developed into coaching those who are also survivors of trauma and are disabled similar to myself. I do this using a virtual reality platform called Second Life. I also own a website and blog to help advocate, education, and rise awareness about disability, mental health, and trauma within the context of disability.

powerfullypowerless.wordpress.com/

The title of this post is a common phrase everyone knows and one that is often heard during the holiday season. ‘Tis the season to be jolly, happy, give thanks, feel lucky because you aren’t in the hospital when many are or because you have more than another person or group of people and so many other things could go on that list. You know them all and probably have heard them all, not only during the holidays but at any time. Many holidays are also surrounded by the idea of sharing a meal with those we love and care about meaning family. Many family homes are not safe and involve people who have caused harm and pain. Food, though a very needed thing for survival, is often the enemy or the comforter for someone dealing with eating disorders.

While any or all of the above mentioned things are deemed to be good or positive there is a bad and sometimes dangerous side that comes with them during the holidays or in general. There was never a childhood Santa letter ever written by me that didn’t include “Please be good to the little girl and boys in the hospital” not because I understood what that meant but because it was a family “rule.” Having a disability has involved multiple stays in the hospital, none during the holidays. Having the constant year-after-year reminder to think about the hospital and those in there took away from the enjoyment of my holiday and experience of Santa Claus. I was never allowed to forget horrible and scary things and always was expected to never forget about those worse than myself leaving me feeling very undeserving of the simple joys of Christmas.

The internal screams to let the holidays be mine and allow me to enjoy them the way they were meant to be, went unnoticed and unheard. Looking through the photo album at a seemingly happy untouched and harmed three-year-old child, having my mother pointing out the toys that I had gotten, being asked if I had any memory of the year Santa was drunk and my toys were broken. Of course, I had no actual memory of the events but, sadly, as I got older I also had no reason to believe that it was being made up because I was still experiencing the results of my father’s drinking along with abuse from both of them. What I do remember from that time was the fear that I had within me for my own life and safety, even at that young age, because Santa aka my father wasn’t only breaking my toys but putting me in dangerous situations.

I was born disabled and as a result, I am unable to walk which puts me in a situation where I require the assistance of another person to get around by helping me into my wheelchair and into places or by carrying me when wheelchair access isn’t an available option. The one you depend on for this being under the influence of alcohol and choosing to also drive puts a person in danger that is not only scary but life-threatening without escape because of the disability. It also leaves a person with no choice but to accept what the situation is in the moment and hope for the best, especially as a child who doesn’t know or understand the dangers. I learned them much later as I got older. I know, I know, forgive and forget and quit dwelling on the negative, put on a happy face, and show up in the world like everything is OK.

It doesn’t do any good to forgive and forget because that which is forgiven requires the actions of the other person to change. Sometimes they can’t because they can’t see the danger or the harm in what they are doing. Speaking about unspeakable acts done to us is trying to process the experience not dwell on the past. Putting on a happy face when we are overwhelmed with many emotions and sensory stimuli around us and the pressure to act a certain way to belong and be part of a group increases the pain we are under and does nothing to reduce or relieve it which in turn causes a negative experience and the cycle starts all over again. Things aren’t always how they seem on the surface. Survivors need to feel safe, supported, and understood for what they have experienced before they can begin to take part in any holiday traditions or handle expectations placed on them during the holiday season and anytime. Illness whether or not they are physical or mental, not for any reason, just automatically shuts off but how other people handle those things around us can without a doubt shut us down. Before this can become a season to be happy or joyful and filled with positivity ‘Tis The Season to be and let be. It is about traditions, not conditions. People deserve joy and experience it in many ways not only the way someone approves of or accepts it as the right way of doing something.

Destiny Mowadeng

Hi, my name is Destiny and I am a Certified Tauma Recovery Coach. I have a disability called Spina Bifida and I am also a trauma survivor. As I am not a person who particularly likes face to face interaction my writing is a vital part of what I do for my own mental health as well as professionally. Being a person with a disability has developed into coaching those who are also survivors of trauma and are disabled similar to myself. I do this using a virtual reality platform called Second Life. I also own a website and blog to help advocate, education, and rise awareness about disability, mental health, and trauma within the context of disability.

powerfullypowerless.wordpress.com/

It is estimated that at least one person with a disability is murdered by their caregiver, parent, or relative each week.

90% of women with disabilities are sexually assaulted, raped, or abused. Those with the highest risk are people who are Deaf, Blind or have mobility impairments, due to missing one of the senses, which helps keep them safe.

Children with disabilities are between 1.5-3.5x more likely to have experienced neglect or abuse than children without disabilities. Data suggest that children born with forms of disabilities are more often abused and more often relinquished to the child welfare system, either by force or choice.

People with disabilities are 2x more likely to experience bullying compared to their non-disabled peers.

Suicide and Disability have many varying percentages depending on the categorization/type of the disability. What is known about disability and suicide is that for those with disabilities suicide is often not due to the disability itself but navigating the world and society’s response to disability, especially when it is a lifelong disability.

Growing up disabled from birth into adulthood made one thing clear and that was the best version of a human to be was abled. I was considered lucky by many to have anyone to help me so I should be grateful. The only thing that was bad, or made things hard for others was me. It’s true that I require support to navigate life as a person with a physical disability and without it, I would not survive. What that is, is a threat to my safety and life NOT luck.

Disability is seen as a burden to society and the individuals who are in support roles. People fail to realize that those with disabilities are the ones most affected by them. There is no choice to take a break or get away from the impact of a disability on the individual with a disability whereas that is a choice when you are external to it. Contrary to popular belief caregivers and those they take care of are not always super close best friends and it is a paid position. Rather than acknowledge this reality people insist on glorifying those who are in roles that are supportive of those with disabilities. Only focusing on the impact of my disability on those external to it is also something that is damaging and traumatic for a person with a disability. The result of this becomes the erasure of those with disabilities.

With disabilities that are physical and limit one’s mobility, a support person may have to assist with anything from transfers from a wheelchair to another surface, bathing, dressing, and even toileting. Any or all of those situations create opportunities for those who are able to take advantage of those who are disabled. Unfortunately, when it comes to emergency situations those who are external to disabilities also create situations that are unsafe for disabled people as a result of not having any measures for their safety in place and lacking awareness of how to go about such things. Fire drills at school were a nightmare for me as a child and teenager. I had not yet gotten a powerchair so fire drills would often mean I had someone rushing toward me, releasing the breaks of the chair, and taking off with me through the door. We would end up in an entirely different location from the rest of the school depending on where in the building we were. Other times there were issues with the double door that we had to access being stuck which would leave us trapped on the upper level of the building. Without there being a real emergency it was terrifying never mind being very aware that the adults were making plans for our removal within earshot and clearly clueless as to what that might look like.

People can set out with the worst of intention or the best of intention but when they fail to realize that there is another full human being involved who they are attempting to help that individual should be considered, if at all possible given the opportunity to have their say and give input into what should happen to them. To loosely quote Jo Beckwith “intention only matters so much. If someone gets hit in the head with a baseball bat it hurts. Whether that was done because you turned around and didn’t see them but they got hit or you were really mad, turned around, and hit them it still hurts.” It seems like people external to disability do not understand just that. The impact of external intentions good or bad has an impact on those with disabilities. Yes, in the case of an emergency, out of the situation alive is generally the ultimate goal but once you’ve done your part in that what’s left is what the person who experienced your intentions has to deal with.

As a disabled person whose been on the other side of what it’s like to be removed from a wheelchair, left helpless on a bed or the floor out of reach of everything and forgotten about, or in a tub and reminding people I am still in there only to have them shout at me plus the experience of fire drills at school I can tell you it leaves a scar. To know that something similar happens to a disabled person anywhere in the world breaks my heart. I can’t even imagine what it must be like for disabled people in the middle of a war zone in a country where disability is largely seen as shameful and should be hidden that has little to no accessibility. I know from my lived experiences that disability is normally the last thing thought about and when it comes to sending aid over what will be provided is things for wounds and broken legs, pain medication, maybe some surgical equipment BUT things like feeding tubes, diapers, any medication that has to be regularly taken and can’t be missed, canes, crutches, walkers, material for building ramps, or portable ramps are not going to be considered.

Just sending over ramps was my answer a week ago. But now it is just questioning…

How many disabled lives will be lost?

Will they become faceless and nameless stats? Nothing more than a number left to remember them.

Or will they be given dignity and recognized as victims of murder as the victims in 9/11 were?

Disability is a strange thing typically only being viewed as a condition when in reality it is a diverse community of people. When part of that group is threatened it is largely felt and when part of that group senselessly loses their lives there is grief.

This blog originally appeared here: https://powerfullypowerless.wordpress.com/2022/03/09/a-price-to-pay-disability-being-at-the-mercy-of-others/

Guest Post Disclaimer: Any and all information shared in this guest blog post is intended for educational and informational purposes only. Nothing in this blog post, nor any content on CPTSDfoundation.org, is a supplement for or supersedes the relationship and direction of your medical or mental health providers. Thoughts, ideas, or opinions expressed by the writer of this guest blog do not necessarily reflect those of CPTSD Foundation. For more information, see our Privacy Policy and Full Disclaimer.

Destiny Mowadeng

Hi, my name is Destiny and I am a Certified Tauma Recovery Coach. I have a disability called Spina Bifida and I am also a trauma survivor. As I am not a person who particularly likes face to face interaction my writing is a vital part of what I do for my own mental health as well as professionally. Being a person with a disability has developed into coaching those who are also survivors of trauma and are disabled similar to myself. I do this using a virtual reality platform called Second Life. I also own a website and blog to help advocate, education, and rise awareness about disability, mental health, and trauma within the context of disability.

powerfullypowerless.wordpress.com/

Safety is the condition of being protected from or unlikely to cause danger, risk, or injury. There are many levels of safety, and many ways to establish a sense of safety. In the aftermath of the shooting in Texas, safety has been on my mind and I’m sure the minds of many others. It’s appeared in the news, in recent years more so, about the poor procedures that disabled people have to deal with within a public, work, or educational space concerning safety in emergencies.

Yes, there are drills so everyone knows what to do in the case of a real emergency and that is great. In those cases, because it’s not a “real” situation what tends to happen are a few kind words to the disabled in this situation to attempt to reassure them that it’s not real, it’s OK, and they ARE safe. The sad reality is that the people around those with disability have good intentions and mean well, but they don’t have a plan of action in place around how to handle navigating the safety of disabled people. Honestly, most probably don’t know where to begin.

It goes against the popular belief because it’s widely accepted and thought that those with disabilities aren’t aware of their surroundings.” Some may only understand it on a toddler level, or not fully grasp the danger that is truly taking place or could, but when you see and hear people around you confused and panicked we as disabled people know it’s not good. There is a realm of truth to the saying that actions speak louder than words in this situation. Typically, what I’ve known to take place, is the exit is different for disabled people than it is for everyone else in an attempt, I assume, not to cause injury with everyone rushing around. While that is a good idea having those with disabilities separate from everyone else in the confusion of a real situation is a huge problem. How are those that come on the scene to rescue and offer help supposed to know where they are? They probably wouldn’t even think to ask.

As a child within the school system who has a disability, we had our route we knew we needed to go and were unable to use an elevator in a fire, for obvious reasons, but it did leave me and the other students separated from the rest of the school. Being someone in a wheelchair, often, what occurred was the fire alarm ringing, especially if it had been pulled by accident, and a teacher or assistant doing what looked like what I call a “grab and go”.

I knew what the alarm meant but having someone swiftly unlock the breaks from my chair and take off with me as fast as they could WAS SCARY! It does add another layer of trauma to an already traumatic event when things aren’t prepared for and handled in a manner like in my experience. Trust me when I say to this day if a fire alarm goes off it scares the heck out of me. What’s dangerous about that is I live with PTSD and can easily go into a freeze response which is no help to me in navigating my way out of something like a fire. Of course, there are always cases of people in wheelchairs who unlike me cant use their own power to get themselves out of a situation like that but the same thing still applies. When it’s poorly handled it has effects because they do realize what is going on around them. I should also mention here that removing someone from a wheelchair isn’t always the best option either. It’s not a black and white situation ever.

It’s extremely important to have proper procedures in place for those with a disability and their own unique challenges. A general idea will fail in one way or another even with the only goal being to get them out alive. Even keeping everyone calm can look very different with a disability in the mix. It’s important for everyone involved to have some level of understanding of the specific needs and challenges those with disabilities face.

When it comes to assistive devices and what their functions are the person can determine if that’s something that truly can be left behind in that case of an emergency. Wheelchairs have parts that can easily fall off because there are many parts of a wheelchair that are meant to be removed. Even the simple act of knowing basic parts of a chair that can easily come off or how they do can be extremely helpful. While I’m great about knowing that stuff even in the calmest situations people take that guidance as an attempt to tell them what to do or how to do it. There is no time in an emergency, especially for an attitude of, I know better than you because I’m bigger, stronger, or trained. The truth is I could easily not be able to express those things in an emergency and really shouldn’t have to if I truly know what to do. The things to consider are really an endless list dependent on the person with the disability.

Just because I may be disabled doesn’t give anyone the right to decide if I live or die. Or to assume if I die it wouldn’t be as bad as if someone else did. Just because I can’t move freely of my own will doesn’t give you the right to control me under the identity of “help”. Just because I can not physically remove myself from a situation doesn’t mean I can’t be held hostage or a bullet was an accident or my own fault because I didn’t get out of the way fast enough. If you want to give those with disabilities a chance to live and have a sense of safety the very least you can do is make it a fair chance.

Guest Post Disclaimer: Any and all information shared in this guest blog post is intended for educational and informational purposes only. Nothing in this blog post, nor any content on CPTSDfoundation.org, is a supplement for or supersedes the relationship and direction of your medical or mental health providers. Thoughts, ideas, or opinions expressed by the writer of this guest blog do not necessarily reflect those of CPTSD Foundation. For more information, see our Privacy Policy and Full Disclaimer.

Destiny Mowadeng

Hi, my name is Destiny and I am a Certified Tauma Recovery Coach. I have a disability called Spina Bifida and I am also a trauma survivor. As I am not a person who particularly likes face to face interaction my writing is a vital part of what I do for my own mental health as well as professionally. Being a person with a disability has developed into coaching those who are also survivors of trauma and are disabled similar to myself. I do this using a virtual reality platform called Second Life. I also own a website and blog to help advocate, education, and rise awareness about disability, mental health, and trauma within the context of disability.

powerfullypowerless.wordpress.com/

We live in a society celebrating busyness and workaholism,  and it looks down on anyone who can’t participate in the global rat race. Critics are harsher on those suffering from so-called “invisible illnesses”, even more so mental illnesses. If we look good, smell amazing, and don’t foam at the mouth, surely, things aren’t that bad?

Workaholism is often a trauma response: keeping really busy so as to not feel or think about our inner turmoil! Aren’t we all told to “leave your problems at home?” “Fake it till you make it!” and “Work will distract you from your problems” It doesn’t matter how we feel, as long as we can work 40 + hours, with a fake smile on our faces!

I, myself, kept myself very busy, for years. At one point, I worked 48+ hours a week, behind a bar, with no holidays nor breaks for a year. In my last job, as a trainee Support Worker, I wasn’t well. I was cutting myself, but I didn’t listen to my inner voice telling me: “You aren’t well. You can’t do this!” What choice did I have as a single mother? Until my mind and my body took a real hit and I had to resign from work. At Job Centre +, a Work Coach told me: “You left your job so I am not sure you will get your Job Seeker Allowance.” and “You don’t look depressed.” I got paid but, hearing these words made me feel anxious and angry.

I used to envy those individuals who found refuge in work, at least they didn’t have to, also, deal with claiming and “living off” benefits, worrying about supporting themselves and their children. Yes, they too suffer a great deal (and need support) but, without the added financial burden. The shame I carry is twofold: I was used as a housekeeper, in my childhood home, always told I was rubbish at cleaning when I was doing my chores, and I was called lazy when I didn’t. This is what pushed me to work and work and work, for so long. “Doing nothing” fills me with anxiety,  and futility, which sometimes brought suicidal thoughts up. “I am useless so, where is the point of being alive?” Second, as I mentioned above, as a society, we are brainwashed into thinking if we can’t work, well, we are worthless. So, it feels like I was abused and shamed at home, and I am still abused (Yes, the Tories are abusing the most vulnerable people in the UK) and shamed, as an adult.

Victims and survivors of child abuse aren’t stupid or lacking in skills. We are often sensitive and creative. A few of us do want to work, as I do, but our depression, or C-PTSD or whatever else we suffer with, takes over, paralyzes us, or bullshit us into thinking we can’t do anything of value. We feel we have nothing to offer to this (cruel) world. It isn’t that we don’t want to, it is that, at this moment, we can’t, nor should we be pushed to do so! Is it really wise to carry on with a job as a trainee Support Worker while I struggle every day to get up? When I am cutting myself? When, behind the fake smile, do I want to die? No, it isn’t wise nor it is fair on employers, clients, and myself. Other people will not want to work. Why shall we judge them? For some, work can be helpful, for others, it is the last thing they need. Any support for unemployed individuals suffering from childhood trauma needs to be person-centered and compassionate.

The effects of child abuse listed below, from NSPCC’s website, clearly show why it is difficult for some adult survivors to focus on their education, get a good job, with a good salary, and, ultimately lead a fulfilling life.

• negative effects on a child’s health, relationships, and education
• adults who were abused as children may find it harder to cope with life’s stresses, get a good job, or be a good parent
• mental health problems, drug or alcohol issues, criminal behaviour – or showing signs of harmful behaviour themselves.

As long as vulnerable people aren’t supported and respected, they will never feel safe to step into the world and being a full participant in Life. Pushing people in poverty into further poverty, because they can’t work is despicable. Some of us grew up shamed and belittled, for things out of our control, and now, we deal with more shame and critics on a bigger scale. This needs to urgently change, for everyone’s sake.

Sylvie

Feel free to share your thoughts and experiences.

(First published on Winter Turns into Spring)

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Sylvie Rouhani

Writer – Blogger – Poet – Mental Health and Child Abuse Activist

Deputy Editor and Journalist for Taxpayers Against Poverty

Author of The Blossoming Lotus”

https://www.austinmacauley.com/book/blossoming-lotus

New Website: Breaking The Cycles

https://breakingthecycles.co.uk/

breakingthecycles.co.uk