Presentation transcript for 2019 Breaking Convention Presentation Talk
"Psychedelic Accessibility: Disability, Chronic Illness, & the Psychedelic Experience"
Hello - my name is Kitty Sipple. A little about me: I am a white, queer, disabled, non-binary femme, and my pronouns are they/them.
I am American and I live in Minneapolis, MN. I am an undergraduate student at the University of Minnesota, and I am getting a Multidisciplinary Bachelor of Science in Engineering Studies, Holistic Health & Healing, and Plant Biology, specifically Fungal Biology.
I am also a trauma and sexual assault survivor.
I am here to talk about Disability, Chronic Illness, & the Psychedelic Experience.
Accessibility note: for anyone who experiences issues around audio and processing - I will have a text version of my talk available at the end of my presentation.
I am mad. Not mad as in angry but mad as in madness.
Madness is a concept that is well defined by many theorists and has been reclaimed in the Mad Pride movement. The Mad Pride movement is a mass movement of former and current users of mental health services that have reclaimed the word ‘mad’, returning the power back to the neurodiversity of human consciousness.
Madness is often connected to mental health conditions, and the term madness is linked synonymously with insanity, mental instability, and, most relevant to the psychedelic community, psychosis.
Gatekeeping is the concept of limiting or controlling access to something.
The most important part of my talk is this sentiment: When we act as gatekeepers of madness, we also act as gatekeepers of healing.
In discussing madness, it is also important to indicate how we talk about mental health. Mental health conditions are a type of chronic illness and disability.
In 2016, roughly 34% of Americans in the US receiving disability assistance through Social Security was registered solely for a diagnosed mental health condition.
Our current mental health model needs to be redefined in order to create space for understanding the complexity of the human brain and its many forms of consciousness.
Our existence with health is structured so we are told by someone else what is normal, and if we do not meet that projection, we are othered. If the definition of normal is just a projection, then the definition of healing is also a projection.
It is my hope that by the end of this talk, we as a community are inspired to rethink the way we approach healing through psychedelics to be more just and equitable for the disabled and chronically ill communities.
The psychedelic community is currently seeking legitimacy through the medicalization model of psychiatry, an area of medicine that systematically strips agency away from the people seeking help.
Psychiatry defines madness as psychosis, which is deeply woven into the pathology of many mental health conditions.
Some of these conditions include Schizophrenia, Schizoaffective Disorder, Bipolar Disorder, Borderline Personality Disorder, Post-traumatic Stress Disorder, Obsessive-Compulsive Disorder, and all of the dissociative disorders.
In many cases, these conditions are considered extreme, persistent, and severe.
Psychosis is just an ‘altered state of consciousness’, otherwise known as an ASC.
The way we talk about these lived experiences is important, and I am invested in changing the narrative.
Moving forward - I will use the phrase ‘altered state of consciousness’ to describe what psychiatry pathologized as psychosis or a psychotic experience.
Madness is a reclaimed idea that works to destigmatize the concept of ‘altered states of consciousness’.
In the US, the Center for Disability Rights defines ableism as “a set of beliefs or practices that devalue and discriminate against people with physical, intellectual, or psychiatric disabilities and often rests on the assumption that disabled people need to be ‘fixed’ in one form or the other.''
Coercive vulnerability strips people of their agency and reinforces ableism, through its beliefs, support structures, and economic demands.
When we believe that people need to be fixed, it implies that we first believed that they were broken.
Legitimatizing psychedelic science research through psychiatry perpetuates the ableist belief that disabled people need to be fixed and inadvertently dismisses the role that trauma plays in these conditions.
For many years, the professional mental health community had not considered the effects of trauma as a precursor for many mental health conditions that have altered states of consciousness as a symptom.
This belief is changing, and professionals are finally acknowledging the devastating effects of trauma.
Psychedelic research has shown successful interventions in the most well known trauma-based mental health condition, PTSD.
Since the psychedelic community is actively engaged in mental health research, this means we are already directly involved with people who experience the many possible narratives of altered states of consciousness.
Psychedelics are chemical compounds that produce an altered state of consciousness that can be accompanied by auditory and/or visual hallucinations.
Psychedelics could be viewed as a temporary and reversible altered state of consciousness. This means that they are performative - people who take psychedelics are performing madness while mad people are living madness.
We only accept one of these scenarios as ‘normal’.
The psychedelic community plays into the stigma of ‘gatekeeping madness’ by suggesting that someone who is already living in madness does not have the agency to participate voluntarily in madness, even in a therapeutic environment.
This strong advisory is rooted in the fear-based belief that people with these mental health conditions are “too emotionally and mentally unstable” to participate in the psychedelic experience.
As a mad person, I believe that they think psychedelics will hurt us, and they are trying to save us or, probably more accurate, save themselves from us.
But if we were to acknowledge the idea that someone could be mad and have agency over their altered states of consciousness - this community may be forced to admit that this person may also have additional skill sets to navigate the psychedelic experience - even more so than someone who does not live in madness.
At this point, you may be asking yourself - why?
Why is this important?
Why do I care about this particular topic?
I have Dissociative Identity Disorder, otherwise known as DID and formerly known as Multiple Personality Disorder.
It took over ten years to get this diagnosis and before I received it - I was diagnosed with Bipolar I disorder, Complex PTSD, and Borderline Personality Disorder. I was misdiagnosed for almost a decade and heavily medicated as if I had each of these conditions.
My reality is: I live in a constant altered state of consciousness. More concisely, I hear voices and experience things around perception, identity, and consciousness, that other people really do not fully comprehend.
Psychedelics saved my life, and I turned to them as a therapeutic intervention after being in psychiatric care for almost a decade, with no successful alleviation of the distress in my life. I was at a crossroads of life or death - and as a last resort - I turned to psychedelics.
However, psychedelics did not cure my condition as there is no cure. Psychedelics did increase my quality of life and gave me the ability to alleviate much of the distress of my symptoms.
I am just one example that people like me can benefit from the medicinal use of psychedelics. I am not special because the reality is - there are many people like me. The only difference is that someone gave me a chance despite my extreme mental health condition.
Toxic wellness culture has defined health and wellness as being cured of any illness, or a purely asymptomatic existence. In order to “feel better, you must get better”.
When someone indicates that they wish for you to ‘get better’ - they are stating that they wish you to be cured and asymptomatic. The quintessential state of perfect health.
Curing is not a toxic issue. Some conditions do actually have a cure.
The toxicity falls on the belief that being sick without much distress and with a high quality of life is not considered as good as a cure and by research standards - is not a viable treatment option.
Psychedelic research has focused on treatments for conditions to produce an asymptotic existence, and for some mental health conditions, there is no “cure”.
In the case of Dissociative Identity Disorder, I stated previously that there is no cure. The reality is: there is no effective cure. And the real question is - do I want to be cured?
Potentially to your disbelief - The answer is no. I do not want to be cured of my symptoms. At this point, my symptoms are mostly not distressing - my constant altered state of consciousness has been my lived experience my entire life, and I cherish it.
But just because I don’t want to be cured does not mean I don’t want to feel better. If I can define my own healing, especially with psychedelics, then I can always feel better.
The first step to changing this belief around health is to realize that healing is not a binary existence of sick vs. cured. Healing is a transient state - a process of coming and going which moves along a gradient.
Healing is removing the distress of someone’s lived narrative, even if temporarily, which allows for more space for skill sets around physical self-care, emotional self-care, and mental self-care to flourish.
Healing is alleviating the suffering but for some chronically ill and disabled people - we cannot erase the pain.
Healing is recognizing that even if there is no “cure’, we can ultimately feel better, even while managing symptoms that may arise in chronic illness and disability.
Psychiatry exists in this binary healing narrative of sick vs. cured and is not interested in reframing the idea that healing is a quality of life issue and not a symptom issue.
Our community is trying to be an alternative part of psychiatry when in fact we should be trying to just be an alternative to psychiatry.
Psychedelics work to provide the space and recognition - that where we are, where we start - we can always feel better, even if we don’t meet society’s standards of “getting better” or “being cured”.
Psychedelics helped me to break through years of dissociative amnesia, otherwise known as blackout amnesia, and gave me the gift of feeling like living in this world was possible. I found clarity in my particular form of consciousness, which allowed me to access and process memories of trauma in therapy.
These medicines gave me the tools to alleviate my own suffering that I experienced for almost three decades, and they illuminated the points of my own resilience that society told me for years I did not have.
Psychedelics as a therapeutic intervention are usually not the first line of defense. They may come at the end of many failed and misguided treatment options that have proven to be unsuccessful and even, more harmful than good.
The belief that people who experience ‘altered states of consciousness’ from certain mental health conditions are too mentally unstable to do psychedelics therapeutically directly removes the agency from those people, like me, to participate in their own healing journey.
This belief was directly adopted from the practice of psychiatry and is deeply rooted in fear and misinformation.
This fear and misinformation create an environment of exclusion. We are excluding people from alternative ways of healing and feeling better.
In order to change, we must consider that there is an alternative:
- that people who experience chronic illness and disability that involves ‘altered states of consciousness’ are fully capable of navigating the psychedelic experience, which is just another ‘altered state of consciousness’ and are just not aware of their capability - yet.
The time has come for this community to facilitate this change without judgment, fear, or exclusion.
Psychedelic accessibility is a disability rights issue.
Also acknowledgement: In North America, a lot of the pioneering work of disability rights activism which provided the space for disability justice work was and continues to be done by communities of color, especially queer communities of color.
In order to move out of a space of fear that creates an environment of exclusion - the psychedelic community needs to step into being intentionally vulnerable. This requires taking a few leaps of faith.
So what kind of leaps can we take?
We open research studies with populations that do not include exclusionary criteria for what is considered extreme mental health conditions - including Bipolar Disorder, Borderline Personality Disorder, Schizophrenia, and any dissociative disorders, including Dissociative Identity Disorder.
We recognize that if we are actively creating viable treatment alternatives for populations suffering from trauma then we have to address how we interact with disabled and chronically ill communities, in terms of language and access.
And most important, we lift up diverse voices of leaders, researchers, facilitators, and academics that are mad, disabled, and chronically ill. It is time to bring us into positions to create the type of healing that we want - not the type of healing you think we want.
Full transparency - I was very nervous to share my personal story in this talk, in this big public forum. I worried about being misunderstood in my experience, disbelieved in my psychedelic advocacy, and reinforced in the belief that I do not belong in psychedelic spaces.
I know these are not truths but these worries were fueled by the beliefs that we as a community have to dismantle.
For all my fellow mad, disabled, and chronically ill peers in the audience: No more silencing our voices because someone may fear our wisdom.
I fully believe that psychedelic accessibility is the start of making this psychedelic community the future that I have always dreamed of, the future that you have dreamed, a future that has space for all of us.
The concept of psychedelic accessibility inherently means making the before - during - and after the psychedelic experience accessible to all communities, especially marginalized communities who experience additional levels of vulnerability from society.
Psychedelic accessibility requires us to move past the comfortable ideas of diversity & inclusion and step into the necessary and uncomfortable ideas of justice & equity. I say these ideas are “uncomfortable” because it means that we have to face the inherent discrepancies and systemic oppression that white, cisgender, able-bodied, heterosexual, and neurotypical people have built - the systems of power that we must dismantle.
I believe that the psychedelic community can be different - we can create a new framework that works from a place of justice & equity. We do not have to rebuild the same framework of oppression that disabled, chronically ill, and mad people suffer endlessly under.
Psychiatric care told me I was wrong, and I had to be fixed. I fully believed that if I couldn’t be fixed, then I did not want to be alive. I took a leap of faith with psychedelics and finally realized that I was never broken. I experience madness and that is my normal, as a disabled and chronically ill person.
In order for psychedelics to thrive into the beautiful potentiality of our lifetimes, we cannot be the gatekeepers of madness anymore.
Resource List
Images https://pixabay.com
Diversity & Inclusion versus Equity & Justice https://sehd.ucdenver.edu/impact/2017/11/30/diversity-inclusion-versus-justice-equity/
US Social Security Disability Insurance https://www.ssa.gov/policy/docs/statcomps/di_asr/2016/di_asr16.pdf
Center for Disability Rights http://cdrnys.org/blog/uncategorized/ableism/