Hosted by Erica Jolene | Transcription HERE
The last few guests we have had on Atypical Truth touched on subjects like resource disparity, advocacy, and social inequalities. I feel very passionate about these topics and I could literally talk about them all day. But it is different to talk about these subjects with my friends as opposed to on air and in such a public manner.
I am not a public speaker and I constantly live with the fear of saying something wrong, but these topics are more important than my fears and I really feel like now is the time to use this platform as a way to educate and hopefully encourage everyone listening to feel as passionately about these issues as I do.
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Hello, and welcome to Atypical Truth. I'm your host, Erica Jolene. The last few guests we've had on Atypical Truth have touched on subjects like resource disparity, advocacy, and social inequalities. I feel very passionate about these topics and I could literally talk about them all day. But it's different to talk about these subjects with my friends, my family, as opposed to on-air and in such a public manner because, guess what, I'm not a public speaker by nature. In fact, I constantly live with the fear of saying something wrong. But these topics are more important than my fear and I really feel like now's the time to use this platform as a way to educate and hopefully encourage everyone listening to feel as passionately about these issues as I do.
So going back to last week's episode, Dr. Goretzke said something that really struck a chord when he stated that even with the best and most effective medicine in the world, it may not help a patient whose socioeconomic needs and social determinants of health are not being met. In order to get to that point where we can address issues within our medical system, our society really needs to address the social inequalities of the world.
This statement, it instantly brought up childhood memories of observations I made of my mother, managing my care as a single parent. To this day, I have no idea how she did it on her own. I know that she had some emotional support from her family, my loving grandparents, my wonderful aunts, and uncles. But when it came to the daily routines, the frequent surgeries, the hospitalizations, and the trips to the city for appointments, all while holding down a full-time job; I mean, she did those things on her own and that truly blows my mind. And it just, it humbles me beyond belief as an adult. And now as a parent of two disabled children of my own, I realized just how hard she had to work to manage it all on her own. And the reality is, she sacrificed a lot, because she didn't have a choice or the support needed to do things differently.
One example of the sacrifice she made comes in the form of my memories of being alone in the hospital a lot. Having an additional airway, it puts you at an increased risk for illness. And for me, that was repeated bouts of pneumonia, which I remember being treated by sitting inside this plastic oxygen tent. Sounds pretty scary, right? Yes. And it was I was terrified. I wanted my mommy there with me every passing second. And my mother would have been there all day and all night if she could. What other choice did she have as a single parent who worked full-time to keep a roof over our heads? Instead, she brought me comfort to my bedside through bringing me coloring books, stuffed animals, little things to remember her by, and a highly coveted New Kids on the Block comforter. Yeah, I'm pretty sure I bragged about that in the hospital. But this is just one small personal example of the social inequalities that Dr. Goretzke mentioned. My mother had to choose between comforting her sick kid while in the hospital or no work, which equaled no pay. And to this very day, it is difficult for me to accept compliments for medical professionals for my ability to be present, my ability to be there with my kids, my ability to be a good parent at the bedside of my child. In those moments, I think about my own mom, and how she deserved that praise to more than anything. She deserved to be there with me every second of every day.
A very memorable Instagram post comes to mind by a disability activist that I follow and I highly recommend @neurodivergentactivist stated, "Disabled children are often seen as financial burdens on their families and society, which is harmful. Instead, we need to look at capitalism and for-profit health care as a burden on disabled people and their families." I think those words "financial burdens," it really just boomeranged me through time. And one moment, I was watching my mother crying as she had to leave the hospital every morning to go to work. And in the next moment, I was back in the empty waiting room with a local NICU sobbing with my husband as we waited for Caratacus to be stable enough to visit him for the first time. We were sobbing for a number of reasons. We were terrified, shocked, heartbroken. And just so very unsure of what his future held as words like, "do not resuscitate" were spoken to us on the car ride to St. Louis. Not to mention, we were looking back in a rearview mirror for the second time in our lives to see an empty car seat.
Dr. Goretzke briefly spoke of his personal reaction to our situation, when we were there with Caratacus and he said something along the lines of, "I don't want to discount the joy that you experience in our lives, but I'm certain there's also a lot of pain that you feel that comes with this." And it was in that moment that I realized that he and so many other people may not have been aware of the extremely conflicting and heartbreaking feelings we were and continue to deal with because they exist as this just incredibly shameful layer to our grief that we feel too guilty to talk about. You see, we didn't just sob because we were scared for his life and his wellbeing. We were also distressed and upset and weeping because we felt a great deal of shame, guilt, and just extreme sadness; because we were so afraid of what people would say or think. We were consumed with the fear of others questioning us with things like, "how could you be so selfish and irresponsible to bring another disabled child into the world?" Or, "Why would you take a risk making another child who would only know seizures and suffering?"
These extremely negative and harmful thoughts, they cycled in and out of our minds in between the more rational thoughts and fear of Cary just not even making it home to meet us sister. You know, I will forever be ashamed of our reactions, our fears, our inner-ableism stealing away the moment we should have been flooding our minds with thoughts of love. We should have found comfort in the reality of how amazing and supportive our circle had always been. And while I'm truly honored, grateful, and appreciative of all the love we have received from our tribe; I think my own personal experiences of living with disabilities are what triggered these fears of how others would react.
We had received so much love and support from our friends and family after Margot was born, but there did come a time when the internalized ableism of ourselves and others was quickly revealed. While we were pregnant with Caratacus, there were many moments, interactions, and situations when we were forced to address the concerns of others. When asked if "this," meaning our daughter's condition, would happen again in future pregnancies, we would always quickly and eagerly respond with the answer we were given, which was that there was a very small and unlikely possibility considering there were no genetic concerns at that time. We even waited until late in our second trimester when we held in our hands, a quote-unquote, "normal scan" by the fetal specialist before we even felt comfortable telling anyone that we were pregnant. And we did that because we felt like we couldn't be openly happy about it until we could confidently deliver a good bill of health.
What a crock of shit. You know? I mean, it was as if I couldn't be happy unless we had created a healthy child, a child who would one day grow up to become a productive member of society. Only then would we be allowed to celebrate and be happy. But there we were, having done everything, quote-unquote, "right." And yet, we still managed to bring two children into this world who would be perceived by many, to be a burden. You know, so many of these social inequalities that Dr. Goretzke touched on, they're rooted in ableism. All of these negative feelings we personally experienced when our kids were born, they stemmed from ableism. Not only were we tormented by the views and opinions of an ableist society, there was a hefty dash of our own internalized ableism that was added to the dang mix.
To understand ableism, you must also understand the definition of disability, which is defined by the ADA as "having any mental or physical impairment that impacts the activities of your daily life." I recently listened to a powerful ableism and racism episode by the Be Antiracist podcast hosted by Dr. Ibram Kennedy. In this episode, Rebecca Coakley, a leading disability rights activist, stated that "the broadness of this definition is inclusive of the wide spectrum of varying disabilities that people might experience."
And I'm going to use this moment to quickly address to those of you who are afraid to use the word disabled, it is important for you to understand that it is because of the inclusive definition disability, that our community has declared the word disabled as the appropriate and preferred terminology.
So that brings me to ableism. For those of you who may not fully understand, ableism is the intentional or unintentional discrimination and oppression of individuals with disabilities. Our society is an ableist society, and it treats non-disabled individuals as the standard for normal living. Therefore, most of the policies, they're created to serve non-disabled people, and therefore they exclude those with disabilities from access to places services, education, and work. In that ableism and racism episode, which I highly recommend everyone take a moment to listen to. Rebecca shared Talia Lewis and Dustin Gibson's working definition of ableism - and it was the first time I had heard this, and I really enjoyed it because it truly encompassed so much. She wrote that "ableism is a system that pleases value on people's bodies and minds based on societally structured ideas of normality, intelligence, excellence, desirability, and productivity."
These constructed ideas are deeply rooted in anti-blackness, eugenics, misogyny, colonialism, imperialism, and capitalism. This form of oppression, it leads people and society to determining who is valuable and worthy based on a person's language, appearance, religion, and/or their ability to reproduce, excel, and behave. Therefore, she states "you do not have to be disabled to experience ableism."
Now, I have experienced many forms of ableism in my life. To give you a personal example of a time when ableism was directed at my disability was when a person I was once engaged to voice his concerns about our future and the idea of making a family stating that he would rather foster healthy kids who needed parents, as opposed to me risking the birth of a child who would be born with similar issues that I was born with. Ouch. And the craziest thing is, this statement came from an individual with disabilities himself, but he's still projected his own internalized ableism onto me and the world because somehow my disability was perceived as worse than his. And if you're asking right now, if there's ableism within the disability community, this is a prime example of how it does in fact, exist in the disabled community as well.
Internalized ableism occurs when a disabled person perceives themselves as less valuable or worthy as a result of their disabilities, and then they act accordingly through negative self-talk or downward comparisons of ourselves to non-disabled peers. So a personal example of internalized ableism was me staying in that relationship, way too long, and being convinced to never have kids for fear of them not being the gold-starred standard of "normal."
"We learned that a good and successful person is someone who has independent, self-sufficient, and is not in need of help. Someone who doesn't impose upon others. Someone who gives more than they take. And if you're suddenly in need of help, you may feel bad about it. Disability in many cases means that you are dependent on others. May that be from a financial aspect or day-to-day tasks, especially when you acquire a disability and there are things you suddenly cannot do any more without help that can feel weird and humiliating. And then at some point, we realize that we often feel bad about ourselves and that those feelings of guilt and shame are connected to our inner-ableism. That's when we need to learn that even though we are less independent and in need of help, we are still worthy and deserving of respect and dignity."
I am still worthy and deserving of respect and dignity. My kids are worthy and deserving of respect and dignity. Damn, I sure wish her words would have reached me like 15 to 20 years ago. Hmm.
So, it has long been ingrained in our society that we need to be self-sufficient productive members in order to succeed and thrive in life. Our society has historically placed a higher value on the lives of those who can make tangible and financial contributions to society. So often, we fail to acknowledge the contributions made by those who are disabled, unless some sort of emotional game-like inspiration is attributed to it. Which brings me to inspiration porn.
Inspiration porn is a term that a lot of people outside the disabled community are uncomfortable using. But I love it. It's so fitting. It was a term coined by Stella Young, who was the late disability activist, you may have seen her on some of her TED talks, she's phenomenal. I highly encourage you to go out there and listen to her stuff. But she uses the term "inspiration porn" when she refers the objectification of people with disabilities in media, which serves the purpose of making the consumers, people without disabilities feel good. And so all this brings me to address a form of ableism that our family receives a lot. And I admittedly rarely have the courage to dress nor do I know how to feel competent, and navigating. And that is the praise and compliments we are given for simply caring for children. So here's another truth for you. This life is hard. And it's complicated. And I enjoy the praise for doing a good job. But I do not feel that I deserve a compliment or praise any more than the next mother raising a non-disabled child, because her life is likely hard and complicated as well. You might be asking, why is my praise and compliment a form of ableism? And you know what? That's a really great question. When non-disabled people say to parents of disabled children, or to disabled people in general, you are so amazing. You're so inspiring. I just don't know how you do it. Ah, those comments. They mean, well, I know they mean well, but they are dismissing the active and oppressive role that our society plays in making it nearly impossible for disabled people and caregivers to do the very theme that is so inspiring to you. The thing you could never imagine doing yourself if you were in our shoes. I know why people can't imagine living this life. I know why people question if they could even do this themselves if they were in our shoes. Hell, Randy and I have even been caught questioning the same thing at certain points in our lives. I know why people think disabled lives are so inspiring. And it all circles back to the beginning of this episode. Social Inequalities.
You might be asking, "Why is my praise and compliment a form of ableism? "And you know what? That's a really great question. When no-disabled people say to parents of disabled children, or to disabled people in general, "You are so amazing. You're so inspiring. I just don't know how you do it." - Ah, those comments, they mean well. I know they mean well. But they are dismissing the active and oppressive role that our society plays in making it nearly impossible for disabled people and caregivers to do the very thing that is so inspiring to you. The thing you could never imagine doing yourself if you were in our shoes. I know why people can't imagine living this life. I know why people question if they could even do this themselves if they were in our shoes. Hell, Randy and I have even been caught questioning the same thing at certain points in our lives. I know why people think disabled lives are so inspiring. And it all circles back to the beginning of this episode - Social Inequalities.
And so all this brings me to address a form of ableism that our family receives a lot. And I admittedly rarely have the courage to address nor do I know how to feel confident in navigating. And that is the praise and compliments we are given for simply caring for children. So here's another truth for you. This life is hard. And it's complicated. And I enjoy the praise for doing a good job. But I do not feel that I deserve a compliment or praise any more than the next mother raising a non-disabled child, because her life is likely hard and complicated as well.
Disabled people are faced with constant roadblocks, denials, restrictions, and financial limitations placed upon us by an ableist society. These obstacles, they are tenfold for people who are considered multiply marginalized based on their race, gender, class, sexuality, and other identity factors. Disabled people are constantly denied the things they need to thrive more often than they are provided for. Not to mention the obnoxious amount of justification, time, and paperwork needed before an approval is given for things that few non-disabled individuals have had to fight nearly as hard for when it comes to their medical needs. I mean, just refer back to Episode Eight my Afterthoughts episode was Shawna - the amount of work she had to do to ensure that Hannah got what she needed...I mean, it's, it's overwhelming. It feels unfair. And I don't know a lot of my peers with non-disabled children who have to keep the kind of records that we do on our children to get the things they need.
I think a really good example of this is how accessible the world suddenly became as a result of the COVID 19 pandemic. Things like telehealth appointments, remote job opportunities, meal and grocery delivery, pharmacy deliveries, live-streamed concerts, and social events. Heck, even started offering free virtual museum and zoo tours. Come on! Where were these things before? And yet, the moment the whole world needed it when non-disabled people saw the personal value of it, so they could avoid the risk of becoming sick and disabled themselves, we were suddenly able to figure it out at a global level in a matter of days. This is when it became aggravatingly clear to the disabled community that the accessible options have always been there, they were always an option. It just took one additional step that our society was unwilling to take until it benefited and protected the non-disabled people too.
The social support structures for disabled people are so completely lacking and flawed. Often as a result of being governed by a large body of non-disabled people. We have had to fight tooth and nail to gain accessibility in today's modern world. And still the majority of the world, both physically and digitally, remains inaccessible to those with disabilities. It's no wonder that people think they could never do this. It's no surprise to me that people think a disabled life is a terrible life because that's all they've ever been led to believe. Despite the fact that 15% of the world's population experiences some form of disability and the fact that people with disabilities exist in every culture, ethnicity, and at every socioeconomic level. Still, we are largely underrepresented in every conversation, every policy, and every form of media as being people who are considered worthy of our basic human rights.
And so far, mass media has not done a lot in shifting the winds of these flawed perceptions and inaccurate assumptions. When I spoke of inspiration porn, this is exactly what I mean, we openly celebrate the success stories of people who overcome their disability. We let videos go viral of people doing very basic acts of kindness to disabled people because *gasp* that non-disabled person must be so special to do something nice for a disabled person - as if we don't deserve that kind of basic decency with every single human interaction we have. And for the life of me, I will never understand this. And yet, I'm willing to admit that even as a disabled adult, I have hit that like button. I have shared that content. So I found myself asking, what needs to happen here? Where do we start in our efforts of restructuring the concept of value and worth attributed to disabled people?
I don't have the answer. I'm still actively educating myself and searching for it. But I do believe that it starts with conversations like this. Conversations from all sides of the field, conversations that reveal the obstacles and inequalities that we all face, from the personal to the professional. And listeners, who are willing to engage and continue these conversations in their own social circles. And I'd like to think that this show is some small step in the direction and growth towards equality.
So as long as our society continues denying basic human rights to disabled people, we will not soon see a day where our lives are valued and perceived as normal or standard compared to non-disabled people. So long as disabled people continue to face insurmountable obstacles in our pursuit of health and happiness, non-disabled people will always fear the idea of life as a disabled person. They will always think to themselves, I just don't know how they do it.
A few good memes are not enough. They may not be seen and read by those who need to see them. A well-written speech can fall on uninterested ears. Hell, even this long-winded episode has likely already been paused and passed up by something less unsettling, something less uncomfortable. So I'll end with this final thought. Our society as a whole must work together to address these social inequalities. The responsibility of addressing these issues should not rest solely on the grassroots efforts of the oppressed communities. And you know what, just do yourself a favor and go watch the documentary Crip Camp on Netflix. I guarantee you will not be disappointed.
But today, I'd like to encourage you to start following more disabled individuals on social media. Start listening to the voices of other disabled individuals and podcasts. And to help you with that I have included some accounts of people who I find to be very informative and helpful in my own pursuit of information about disability activism. So you can find links to those accounts in the show notes.
The beautiful soundscape behind this podcast is titled "Rugla" performed by my favorite contemporary music collective, Amiina. The cover art for Atypical Truth was designed by Kendall Bell (@littlebell.co). Links for these artists can be found in the show notes.