Hi, my name is Destiny. I live with a birth defect called Spina Bifida. It is what I have NOT who I am. That being said, it affects my daily life in many ways including how I show up in the world and how I interact with it. My life is not a script from a made for TV movie. I am often viewed similarly to those "As Seen On TV" infomercials. I know you have seen them. You've probably even brought into some of them yourself. They are often products that fail to meet your expectations from what they were claiming to be in the ads or you get them home and they work amazingly well only to malfunction right after the 30-90 day money-back guarantee runs out!
That is NOT me either but you may have been fooled into thinking either example above is the reality of my life. The current state the world is in with protests and riots over racism has sparked a few heated debates. There has also been huge worldwide news coverage of the entire situation. With media comes creative license and with that comes a whole host of other issues that I will dive into a few of here later.
Recently an article came across my screen and again in my inbox. The article is titled 8 Influential Black Women with Disabilities to Follow. It was published within the time frame of everything going on.
HOLD THE PHONE...RED FLAG!
Black = Minority
Women = Unequal (if not considered a Minority)
Disabilities = Minority
Influential = We are supposed to inspire you to change because "if we can do it with the challenges life throws at us, WHY THE HECK CAN'T YOU?" That's called inspiration porn and can come in many forms, including memes. The disabled person in those cases is never asked so they are not consenting to the creation of the material.
I do not wish to demean anything that the eight women mentioned in the post do to make a living. What the women have accomplished is wonderful but not because of a disability. I do desire to bring light to some of the finer, missed, or overlooked points. All disabled people have many unique gifts and talents. As a disabled person I know we are often seen as a lesser value because we do things differently. What I have a huge problem with is using innocent disabled women as a weapon. It was painfully obvious to me that this was the case. The article might as well have been titled "Proof the US Government Isn't Racist and Doesn't Discriminate." I am a disabled, white woman from Canada and I'm not okay with that!
Disability is defined in two ways. A physical or mental condition that limits a person's movement, senses, or activities. The second is a disadvantage or handicap especially one imposed or recognized by law. How it is defined is problematic. It fails to realize that disability means different things to different people. It also fails to give a clear picture of what a disability looks like. It can't give one because it’s an umbrella term that is viewed as having one meaning. This results in a disabled person having to advocate for themselves proving themselves again and again in a world where nobody believes them. They are left to pave their path in the world largely being fought against and misunderstood.
In the article of all the disabilities mentioned, we have a Harvard law graduate, nurse, clothing designer, and others. Great! anyone with or without a disability can do any of those things. The law graduate doesn't appear to be working within the legal justice system and likely never will. The nurse says she has to fight to do the work of a nurse and not do anything except sit behind a desk because she obviously can do that so she should. She appears to have become slowly disabled over time and was possibly a nurse before becoming disabled. The clothing designer is an amputee, missing a leg. That has nothing to do with her ability to sit behind a sewing machine, at a computer or desk to draw wonderful designs for clothing. When wearing her creations and taking pictures they are cut off so the prosthetic doesn't show! Many of the others are in the entertainment industry and every last one of them is into disability rights, activism, or advocacy of some sort except the nurse. I think you are starting to get the picture here and seeing a pattern. Disability and Sex have something in common...THEY SELL!
The entertainment industry is the area that has the big bucks. The harsh reality is the big bucks don't go far when you are someone living with a disability and have more to cover due to the disability compared to other people. There are models, dancers, and actors that do have disabilities. The big questions...are they working for the same companies as anyone else? Or are they all working with companies that are specifically for those with disabilities even their type of disability? The reality very well may be that they are a model, or they are a dancer or an actor but maybe only had one shot at being either of those things.
When you hear about disabled models and actors on TV what you are most familiar with seeing are able-bodied people posing as or acting the part of a disabled person. (i.e. a wheelchair user) Rarely in any movie do you see someone with a disability playing the part of their disability. The same is true for images for ads to sell products. To a disabled person using an able-bodied person to act like them is very offensive and comes off as very fake. We know what we live with daily isn't anywhere near as good or as bad as what is shown. I know some of the disabled people mentioned in the article, not personally, but from social media. That's what many of them do mostly not model or act.
I mentioned briefly about companies for disabled people. I don't want to mark them as good or bad but I will say this: their existence is discrimination with a friendly face with the focus being on the disability, not the person. It makes able-bodied people look good and seem like great people when they create things like this for a part of society seen as weaker, unimportant, and less than anyone else. Don't subscribe to the images you have seen in the media as what disability is. It's truly not reality or an in-depth view of disability.
There is also a huge problem with mainstream companies using those with disabilities for photo opportunities or campaigning as a way to make themselves or a brand look good. The disabled person is used only because they are disabled and fit an image a company wants to portray. It’s called tokenism. By subscribing and buying into that sort of media you are allowing the people that paint disability in that way the right to do so. It's not only a problem on mainstream media but social media in the form of inspiration porn.
By necessity people with disabilities have to become adaptive and learn ways to navigate the world. This is not because we want to but we have to if we are to survive in a world that wasn't made for us to fit. Our biggest fight is often to have accommodations and modifications met. We are seen as needy, selfish, or as creating DRAMA. You may not always understand some of our needs, that doesn't mean we don't need accommodation or modifications. You don't have the right or ability to determine that.
We are often not heard, seen, or respected as individual human beings capable of things. We are expected to be poster children and spokespeople for our disability. That's the path the world laid out for us. The one that money can be made for their benefit.
Two extremes exist but there is a larger group in the middle who don't desire fame and dread being seen as an object to be pitied than there are people who are in the public eye being viewed as amazing overcomers of their disabilities instead of being accepted as people with them. Just because we are capable of working doesn't mean we are magically not disabled anymore.
If someone has the chance to and wants to pursue a career in entertainment they should be able to no matter if they are disabled or not. Nobody should be placed in a position where they have to sell their disability to earn a living or worthy of the space they take up. It's time we stop all the toxic positivity and inspiration porn that disabled people face. It’s time to embrace the struggle and raw, real human beings we truly are!
My reality as a disabled person is a person who struggles to fit into the two extremes while truly not wanting to be part of either one of them. What my experience is I can best sum up in a quote from Dr. Jamie Marich: "As a society, we tend to celebrate those that perform well hurt and we criticize or even demonize those that ask for help or otherwise show weakness.” For those of us in the middle, we are celebrated for being disabled while criticized and demonized for the same thing.
That's my story and I'm sticking to it.
This last year and a half has been an unending nightmare. I was “outed” as a person with a borderline personality disorder (BPD) by an angry classmate who I had trusted with this information. In the clinical psychology world this can destroy your career. What happens then to a clinical psychologist in training who outs you as a person who has been given a highly stigmatized mental health diagnosis? Nothing.
After what I thought was a minor disagreement, a colleague who has dealt with mental illness themselves and currently works with therapy clients, shared my mental health history and other personal information with other colleagues. Initially, I attempted to have an open discussion with this colleague. After several attempts at confronting this person, they became increasingly abusive. This colleague has since pushed me in the students' lounge, consistently rolled their eyes when I speak in class, shut me out of conversations and given me the silent treatment. Furthermore, they have isolated me and ruined my professional relationship with others in the program. In short, I am being bullied.
BPD is a highly stigmatized diagnosis. Although I do not identify with it and do not consent to this diagnostic assignment, it was given to me as a teenager. I experienced multiple levels of ongoing abuse, neglect and self-harm. These experiences spilled over onto my psychiatric treatment. Due to the many mistreatments and constant dismissal of my experience within the psychiatric community, I now consider myself a recovered psychiatric survivor.
As clinical psychologists we are trained to practice five principal ethical principles: benevolence and nonmaleficence; fidelity and responsibility; integrity; justice; and respect for people’s rights and dignity. Yet, two years into a doctoral clinical psychology program I have heard many horrifying things about people with BPD. The most common label is that “borderlines” are manipulative, needy, irrational, difficult, clingy liars; and incapable of completing graduate school or even undergraduate. Another misconception is that people with self-harm scars must have BPD. Diagnoses are reductionist labels. Although for many people they provide an answer to their troubles, for many others they add to their troubles.
Going back to where I started, I was “outed” without consent. After six months I finally got fed up and told my advisor what was happening. They advised taking meaningful action against this person. A school appointed psychologist told me to “suck it up.” I had done that for many months, wanting to respect this person's need to be angry and tolerating their continued abuse. Only one other colleague knew, but they remained close with the other colleague. I met with the program director, but there was not much they could do due to lack of evidence, and I did not want to disclose further details about my history, partly for fear of additional stigmatization.
I have enough going against me as it is for the clinical psychology field. I am a Latinx woman with little U.S. connection and Spanish as a first language. In addition, I have scars, the result of violence, abuse, self-harm and more. My scars can be seen and judged by anybody who pays close attention, which psychologists are trained to do. For the last year and a half, I have felt powerless. Some colleagues have caught up with the hostility but besides offering moral support have not done anything proactive to help stop the bullying colleague or be an ally.
Some colleagues have expressed that they do not want to fall at odds or be shunned by others, basically end up in the position I am in. What worries me is that not only myself, but our patients, are being put in these positions as well, dehumanized by the very professionals charged with helping them. The clinical psychology field seems to have an us (the healthy ones) versus them (the mentally ill) perspective. The field feeds and exists on the ideal that clinical psychology helps others heal, but in reality, they look suspiciously at those who have been able to heal, survived the system and have a desire to do the same for others. The field exists within the same authoritarian hierarchy as many other systems that perpetrate injustices. At one point a PhD student who disclosed their given diagnosis was told that by sharing that information they had created a “burden” for their colleagues. They mentioned how their mentor and “lab mates” had joked about their given diagnosis and how they felt the need to disclose their given diagnosis in order to make them stop. In addition, a historic lack of all expressions of diversity race, gender, cultures, economics, languages, sexual orientation and psychological experiences permeates the field to the detriment of the patients.
The ethical principles that rule clinical psychology are practiced as long as providers are the sane/normal ones and the patients are crazy and incapable. This has been further demonstrated by research on mental health provider stigma which may also take the form of prejudice and discrimination. For the last year and a half, I have felt isolated, betrayed, powerless and for the most part, defeated. I considered dropping out on multiple occasions. A quick Google search showed that there are not many clinical psychologists with lived experiences who are “out.” This made me wonder, how many of us are living in the shadows, quietly listening to others in our field making deprecating comments about people like us and being marginalized and bullied. Additionally, I wonder how “out” I actually am, how many people know and how will the labeling ultimately affect my career. These thoughts keep me up at night and I have debated many times whether or not to “officially” be out, and at least regain my narrative and speak out. Within our field it seems that labels or given diagnoses place a person within a box, context, or circumstance and the person's personal experience are most often discredited and dismissed.
One thing they could say if I “come out” is “Here she goes, the manipulative needy woman, needing attention,” as psychologists have previously said about individuals with a given diagnosis of BPD. These are the same beliefs that maintain the status quo, that create systematic barriers for individuals with lived experiences to speak out, get help and recover. These are the same mechanisms which perpetuate abuse within our mental health system. The field needs to change, clinical psychologists need to be held accountable for their role in keeping the status quo, and maintaining inequalities. In my opinion, clinical psychologists need to be challenged from the minute training starts, any training.
Individuals with lived experience in mental illness should be at the forefront of this change and leading these conversations, we are the ones who have been through the system. Even if our perspectives of how the mental health system should be revolutionized digress, they matter. Instead the field of clinical psychology, which often promotes healing and recovery, ironically keeps us marginalized as being “unable to recover.” Moreover, from what I know, many schools do not ask that clinical psychologists attend therapy themselves and for that reason many have never been in the patient’s role. Is this not hypocritical and counterintuitive? I am calling my field out for its hypocrisy and continued dismissal of marginalized voices. The field already exists within a Westernized white developed bubble and it is time to put a stop to all of this. Simultaneously, I am calling out my colleagues and future clinical psychologists for their continued participation in these practices. As it is, the clinical psychology field continues to promote and monetize the dehumanization of mentally ill people.
When will the dehumanization of people with lived experiences in mental illness stop?
Do not deny what comes up with your reaction. Reactions aren’t all bad--as some distorted spiritual teachings claim them to be. There are times when they show us where we can no longer accept certain behavior or treatment from another.
Nowadays, many of us are turning towards spirituality and ancient wisdom teachings to enhance our lives and look deeper within. We may have realized that conventional ways are not working so well anymore. Please be aware that it is actually important to learn to engage safely in spiritual practice...who knew?! This way of living should be approached in a balanced way where we can discern what is right for us and what does not serve us.
For the most part, the teachings and teachers are not questioned. Instead they are revered and followed very devoutly. Although it may be seen as “unspiritual” to some, these teachings have to be reviewed or questioned just like anything else. Don’t get me wrong...there are many gifts wrapped in these ancient teachings. There are also many ways that, if practiced to an extreme, these teachings can put you into danger; especially if you are in a vulnerable state or have endured trauma in your life.
What is lacking in many spiritual communities is a healthy balance between respecting our humanness and connecting with our spirit. We need not abandon one for the other. Some people who seek out spirituality are lacking in psychological and emotional awareness, causing them to use the teachings to bypass their humanness in the name of “ego transcendence.” I hate to tell you...but we are stuck with our egos...they are not going anywhere anytime soon!
The ego-mind likes to think and act on our behalf, therefore; it has its own agenda and wants to protect us from our past experiences even though they are not happening in the present. This is understandable and we have to remember that our egos try their best (although limited in their approaches) when they perceive danger in our current environment. Your ego is not “bad” and should not be gotten rid of. Our egos, in fact, allow us to think critically, solve problems, understand interactions, make decisions, discern right from wrong, analyze data and sort through information. If you deny your ego entirely, the workings of your mind can become partially disabled and you may be unable to perform these tasks in any balanced way because you won’t trust your own thoughts and actions. This can be very dangerous!
Even some spiritual teachers, who boast of this transcendence, have the biggest and most destructive egos of all, and ironically, this is all playing out unconsciously...without them even noticing. Or sometimes they are very well aware and simply on a power high. If a teacher is denying the existence of their ego (or thoughts/behaviors/patterns) in an effort to keep their spiritual image, they are also denying their “dark-side”. These parts that are being rejected subconsciously come up and control their life through unconscious behaviors and repeating patterns; even harming others around them who trust them and are wanting to be of service and give of their hearts. Certain spiritual teachers, caught up in their own egos and unconsciously denying their “darkness”, steer us away from expressing a reaction in any way and so we may not recognize the important messages for us that often come along with them.
Let’s talk about “reactions” and the shame that often comes up when daring to allow yourself to actually have them. Overly spiritual people might say that the reaction is just “resistance” to “what is” and that you should “accept things the way they are”. In the case that you are unable to accept “what is”, for any variety of reasons (or are unable to take the spiritual route and you do have a reaction) you may feel shame because you have not practiced the teachings in the best way possible. Or maybe you think that you are not worthy of this spiritual practice because you aren’t doing it right and are getting away from your intention.
Sometimes, it is just not complete to say that you are just in resistance or that you should accept things as they are. There is more for us to see here. In cases of abuse or manipulation, why should we just accept what is? Maybe we should not. Maybe we should speak out for what is right or say those facts that someone who is abusive wouldn’t want to get out. Actually, I think that is exactly what we should do. Because whatever abuse or dysfunction is going on is enabled by us being quiet or just accepting it. The cycle will continue if we spiritualize our reaction to these types of dynamics. This is a case where you can use your ego-mind to discern what is right for you to do...but not if someone has convinced you to believe the ego is all bad and should be thrown to the wolves!
Let’s say you are overwhelmed by your life circumstances and you feel like you are reaching a breaking point. You may have a reaction. In this case, feeling the emotions strongly enough to get into the reaction may actually be healthy for you in order to make a change.
We are taught that reactions come up from unresolved circumstances, in the form of triggers, from our past. When something irritates or angers us, we should:
I agree with this teaching in principle and it has been beneficial to me--increasing my capacity in many areas. However, if you are in an abusive situation, or are constantly pushed too far over your edge of comfort, this teaching can be practiced in a distorted way.
In a spiritual community, we learn that once we have dropped the energy behind the reaction (calmed down) and have the ability to respond...then we can approach the person who triggered us. That is a good plan...except that, at this point, we may have prematurely forgotten about the impact of the abusive person or forgiven them for their actions, even if it was not a forgivable thing that they did. Yes, I said it...some things are unforgivable!
If we spiritualize everything and live in some ethereal realm floating above ourselves, completely detached from our humanness, then we may allow people to treat us in many ways that are not healthy, not conducive to our growth, or even keep us in cycles of trauma. We could be spiritually bypassing our reaction and denying our own feelings about it in an effort to “let go of”, “relax with”, or even “surrender to” it. What we are actually doing, in many cases, is suppressing the reaction. Beware, what you may be “surrendering” to is abuse!
Let’s talk about the messages that accompany reactions.
Maybe you are in a circumstance where you are under a lot of pressure at work and your partner isn’t very supportive (seems to be a common example these days). So, something sets you off and you “flip out” and start screaming at them about how you can’t do this anymore and then realize that you have to make a big change--that is probably accurate. And yet, if you are trying to follow extreme spiritual teachings on reactions then you may think you should just drop it or let it go and wait until you drop the energetic charge and can respond. Here, you stay with the partner; you stay at the job.
This is an alternative: when you lose your temper, allow your reaction to reveal to you that you have to make a big change. Look at it. Investigate: what is it trying to tell you? Question it...let it be there. Be with it. Don’t be afraid...this takes courage.
You know, if you “breathe” enough with it (especially many different times with the same trigger) and it passes, you may just conclude that you are in a reaction based on your “past programming” and you were wrong to think those things. Or maybe you can respond instead when you drop the energetic charge. By that time, you have probably talked yourself out of what you know you need to do...once again. This breathing and acceptance may happen again and again with you believing it is your own internal work to do; giving the other person a pass.
Of course, others shouldn’t be continuously subjected to your reactions. There are ways to express them--or you can learn to listen to yourself before they become so forceful. You should note: if they come up often, you need to take action or you may stay complacent under terrible conditions.
So, what if this big blast of energy in the form of a reaction is informing you that you are to make a change? Oftentimes, it is. Don’t throw out the information it gave you just because it came up the way it did. Don’t walk out of alignment with yourself, your body, and what you know you must do. Yes, by all means you can wait to calm down before you respond, but don’t miss the point! Use your reaction to empower yourself to see the truth of the matter. Reach a place where you are not overtaken by emotions, can act calmly, and discern what is appropriate for you.
Allow taking care of yourself and feeling safe to be your biggest priority. Realize that the reaction arrived for a reason. You may constantly be putting yourself over your edge where you will face anxiety, depression, rage, and shutdown.
In my experience, this is the core of many episodes of anxiety: knowing you should do something and not following your knowledge and intuition to change something in your life. Instead, you may find yourself discarding this information, not listening to yourself, feeling too much fear to do something different, maybe denying what you feel in your body. And so you avoid making a decision, maybe unknowingly justify another’s actions. Sit in what does not serve you. You are crawling in your skin. And you feel awful.
Maybe you KNOW you should get away from your partner who you constantly argue with or leave the abusive job that requires way too much of your energy... and that’s what causes you to be very reactive. Instead of believing you are the problem, realize that you need to create a solution-- and follow through with it. Even if it feels unnatural and impossible because it is not your usual pattern--get some support and go with it!
Don’t throw the baby out with the bathwater. As in, don’t ignore the action that came to you--just because it came in the form of a re-ACTION.
You need not over-spiritualize your humanness. The gift of this life is to experience the richness of your human side, both dark and light, as you connect to your spirit--grounded on this earth.
Institute for creative mindfulness
Our work and our mission is to redefine therapy and our conversations are about the art and practice of healing. Blog launched in May 2018 by Dr. Jamie Marich, affiliates, and friends.