Disability Justice 101: A Webinar Review

 

The Fireweed Collective along with the Spoonie Collective out of Los Angeles presented a webinar titled Disability Justice 101. The Fireweed Collective offers mental health education and mutual aid to help change the harm of abuse and oppression created by the mental health system. They are working with the Spoonie Collective which is a group of LGBTQIA+ individuals with disabilities, neurodiversity, and chronic illnesses. The Spoonie Collective offers in-person and virtual workshops and panels on the intersection of race, gender, disability justice (DJ), feminist theory, and more. This webinar covers basic terminology, disability theory, disability justice vs disability rights, disability movers and shakers, disability justice in the time of COVID-19 and becoming a DJ accomplice and is hosted by Tasha Fierce and Laurent Corralez.

Tasha describes themselves as queer, Black, disabled, nonbinary femme who is a writer, artist, crisis doula, facilitator and mystic. Their website is tashafierce.com. Laurent describes himself as a physically disabled, trans, latinx community organizer and zinester.

Definitions

The first item discussed was defining Disability Justice and what it looks like. A picture was shown to define DJ. It had the following words: intersectionality, leadership of those most impacted, anti-capitalism, cross-movement organizing, wholeness, sustainability, cross-disability solidarity, interdependence, collective access and collective liberation. Sins Invalid states that DJ looks like valuing each body and the power it yields. It holds that each body is unique, essential, has strengths and needs that must be met. Bodies are powerful because of our complexities not despite them. Finally, DJ recognizes that all bodies are confined by ability, race, gender, sexuality, class, nation state, religion, and more, and we cannot separate them.

The next few terms that were defined included ableism, disability and invisible disability. The Center for Disability Rights defines ableism as a set of beliefs or practices that devalue and discriminate against people with disabilities. It assumes that people with disabilities need to be “fixed.” The definition of disability is taken from Sins Invalid. It states, “We define disability broadly to include people with physical impairments, people who belong to a sensory minority, people with emotional disabilities, people with cognitive challenges, and those with chronic/severe illness.” Some disabilities are considered invisible since they are not overtly obvious. They are defined by The Center for Disability Rights as, “a physical, mental or neurological condition that limits a person’s movements, senses, or activities that is invisible to the onlooker.”

The final 3 terms defined were chronic illness, neurodiversity and trigger. A chronic illness usually refers to a health condition or disease that has persistent effects, comes with time, and lasts more than three months. Psychology Today defines neurodiversity as the idea that neurological differences like autism and ADHD are the result of normal, natural variation in the human genome. This is not a universally accepted definition but is gaining support from science. Finally, a trigger is a stimulus that causes feelings of past trauma. It may illicit feeling of overwhelming sadness, anxiety, panic, or flashbacks.

Disability Theories

After these definitions were explained, several disability theories were shared. These theories attempt to illustrate how a disability can affect different aspects of life such as energy, stress, and vulnerabilities. The two theories that stood out were Spoon Theory and Fork Theory.

Spoon Theory was developed by Christine Miserandino to explain how disability or chronic illness can reduce mental and physical energy. According to this theory, a person wakes up with a certain amount of spoons for the day. Each task performed, as well as pain and fatigue, takes away a spoon. When all the spoons are used, a person’s energy is gone. The idea is that the pain, fatigue, or daily struggles can use spoons (energy) that ordinarily could be used on other tasks.

The Fork theory is a corollary to the Spoon Theory meant to help neurodivergent and neurotypical individuals explain how stressors affect their disability. In this theory, a fork is any stressor that is stabbed into an individual. Stressors can be big or small. An individual’s fork limit is different each day. When the limit is reached, the next stick no matter how big or small will set the person off. This explains why a little annoyance can evoke a disproportionate reaction.

Disability Rights vs Disability Justice

It is important to understand the difference between Disability Rights and Disability Justice. Disability Rights has to do with working within the legal system to ensure personal rights. To be able to access these rights the person with the disability must know that they are entitled to the mandated right and may have to fight for them. The claim to fame of the Disability Rights movement is the Americans with Disabilities Act, or ADA, of 1990.

While the ADA is a legal solution, it does not address societal attitudes towards people with disabilities. Collaborators of DJ movements understand the ableist supremacy and white privilege that has been created with respect to other systems of oppression. It is commonly acknowledged that people with disabilities are treated as disposable. The machine perpetuating these attitudes must be dismantled. This is where Disability Justice comes in as it seeks to honor people’s access needs and is not performative. DJ seeks equity in all areas of life and society.

Movers and Shakers

There are many movers and shakers that have played a part in the Disability Rights and Disability Justice movements. Here are a few that the presenters shared. First up was Sins Invalid. This project grows and features artists with disabilities centering on artists of color and LGBTQ/gender-variant who have been historically marginalized. They work to shift the paradigm of what is “sexy” and “normal.” The second Organization mentioned is Disability Justice Culture Club. It is a house in East Oakland where persons with disabilities who belong to the BIPOC community hold events, meetings and meals.

The Disability Visibility Project was the third organization mentioned. This online community creates, shares, and amplifies disability media and culture. They believe narratives from people with disabilities matter and have created media from oral histories if those with disabilities. They also publish items from the perspective of people with disabilities that have to do with ableism, intersectionality, culture, media and politics. Next to be mentioned was the Deaf Queer Resource Center founded by Drago Renteria who is a Deaf queer/trans activist. It went live on the web September 1, 1995.

The Kindred Southern Healing Collective was established by people of color in the southern United State after hurricane Katrina. It was in response to trauma, violence and social conditions in the south. Members created Good Medicine, a recording of interviews with southern healers and activists.

The final mover and shaker highlighted was The Los Angeles Spoonie Collective, a group of individuals with disabilities, neurodivergent and chronically ill LGBTQIA+ members. They have programs which supports this community. The Limitless Letters Pen Pal Program pairs incarcerated LGBTQIA+ individuals with pen pals. The collective’s Care Web website which tracks members needs and how members can help one another. They also provide workshops and panel discussions on the intersections of race, gender, and disability, disability justice, feminist theory, and more.

COVID-19 and Disability Justice

Disability Justice 101 concluded with the effects of COVID-19 on the disability community. The pandemic has brought to light systemic inequities including the brokenness of our healthcare system, a lack of support for the unemployed and the failure of the nuclear family. Officials and politicians have also called on the vulnerable to be sacrificed. People with disabilities have been deprioritized in triage, have been put last in line for ventilators, are disproportionately given DNR status, and have had their quality of life devalued. Throughout the country there have been letter writing campaigns to make healthcare institutions value and treat individuals with disabilities as they would an able-bodied person.

Historically, marginalized groups have helped themselves through mutual aid. This is a broad term that can involve mercenaries or anti-government establishments, but for disability justice’s purpose it is described as coming together to meet basic survival needs that the system cannot or will not provide. Mutual aid is a form of political participation to care for one another and change political conditions by building new social relations that are more survivable. There were three types of mutual aids given, promotion of self and community care and health prioritization, growing anti-capitalism, and care networks or webs.

Becoming a DJ Accomplice

Finally, there was a discussion on three ways to be a disability justice accomplice. The presenter acknowledged that this is not an exhaustive list. First, check your privilege and use it. This may look like standing up to discrimination (seen or implied) within your social group or place of employment. The second way to act is to evaluate and use the skills you have to empower or help someone with a disability. For example, if you are a lawyer, help or connect someone who can help a person navigate getting on disability. Lastly, build a mutual aid map. This is a visual representation of how different groups and individuals are helping each other.

People with disabilities face many challenges. Practicing and promoting disability justice is essential to empowerment and reducing marginalization of the community of people with disabilities. The Spoonie Collective did just that through their Disability Justice 101 webinar. They defined what disability is and the many kinds of disabilities. Several theories were explained to conceptualize disabilities and then a discussion of disability justice and disability rights. The webinar concluded with illustrating the disparity of those with disabilities during the COVID pandemic. Society needs more programs like this with greater visibility to de-marginalize people with disabilities.

Picture of Jennifer Milharcic wearing a pink top. She has an open smile and short brownish hair.

(Picture of Jennifer Milharcic wearing a pink top. She has an open smile and short brownish hair.) Jennifer Milharcic has Cerebral Palsy and is an independent contractor with the Indiana Coalition Against Domestic Violence and Indiana Disability Justice. She loves to hang out with friends and her dog Becca.

Supporting Survivors with Cognitive and Developmental Disabilities, a Training

Supporting Survivors with Cognitive and Developmental Disabilities

Haleigh Rigger
Haleigh Rigger looks straight into the camera with a slight smile. Haleigh is wearing a heather gray sweater, is wearing cat eye shaped glasses and has long violet hair.

On June 3rd I had the opportunity to present strategies for supporting survivors with cognitive and developmental disabilities thanks to a partnership between my agency, Indiana Coalition to End Sexual Assault and Human Trafficking (ICESAHT), and the Bureau of Quality Improvement Services (BQIS), a division of the Family and Social Services Administration (FSSA). This training focused on how direct support professionals, case managers, and their leadership teams can best support survivors after they disclose. We also discussed strategies for building trust and rapport and navigating the tricky waters of maintaining a survivor’s privacy while also following state and agency mandates in reporting. Lastly, we invite disability service providers to review their protocols, engage self-advocates in conversations about sexual wellness and violence, and incorporate trauma-informed principles into their organizational culture. You can access the recorded training here and below.

As individuals with developmental disabilities are sexually assaulted at a rate 7x higher than folks without disabilities (NPR, 2018), it is crucial that we in the anti-violence movement partner with caregivers and disability service agencies in responding to and preventing violence against folks with disabilities. Even more important, those of us who are professionals in this movement must center people with disabilities in our anti-violence work and pass the mic to those who are most impacted. It takes multi-disciplinary teams, that are led by and for people with disabilities, to holistically serve survivors and prevent violence from happening in the first place. As my friends and colleagues at Indiana Disability Justice say, “Nothing about us, without us.”

A list of 17 webinars featuring centering disabled people and members of Indiana Disability Justice is available at this link.

Post authored by Haleigh Rigger, Indiana Coalition to End Sexual Violence and Human Trafficking and Indiana Disability Justice Leadership

Posted by Cierra Olivia Thomas-Williams, Indiana Disability Justice Leadership, Indiana Coalition Against Domestic Violence

COVID-19 Vaccine Advocacy Opportunity & Resources & Information for People with Disabilities and Caregivers

The Center for Health Equity (CHE) at Indiana Institute on Disability and Community at Indiana University is working to improve access to and confidence in COVID-19 vaccine among Hoosiers with disabilities and their caregivers to increase their vaccination rates. CHE has compiled resources about COVID-19 and vaccines for Hoosiers with disabilities and their caregivers; you can view and share this resource at the following URL https://www.iidc.indiana.edu/che/resources/covid-19-vaccination/index.html. 

There is an opportunity for community members to become involved in advocating for vaccination. Are you a person with a disability, or a caregiver who has been vaccinated and would be willing to share your positive experience? CHE has been posting such story on social media to help increase vaccine confidence. CHE will also create several videos a) sharing experience in vaccination, and b) portraying how being fully vaccinated allows people to participate in more social activities while protecting themselves and people around them. If you are from the following counties and are willing to share your story,  please contact Lydia Hamilton at lydhamil@indiana.edu or Don Dumayas at ddumayas@indiana.edu for more information.

CountyPopulationVaccine Rate
LaGrange County39,19321.2%
Newton County13,99223.6%
Franklin County22,77425.0%
Switzerland County10,68525.1%
Daviess County33,12027.6%
Carroll County20,07427.8%
Miami County35,81528.9%
Starke County22,95229.1%
Parke County16,94629.2%
Crawford County10,56930.4%
Fayette County23,19431.0%
Benton County8,67731.2%
Adams County35,37631.5%
Noble County47,50631.8%
Jennings County27,71031.8%

Maintaining Social Distancing

(Please Note: The author wrote this piece before the roll-out of the COVID-19 vaccines.)

I never thought of the phrase “may you live in interesting times” as a challenge until recently. But after the last few years and especially 2020, it’s starting to feel at the very least like a challenge if not an outright threat. I’m only thirty, but I am so tired of living in interesting times. I’m also disabled, and historically speaking interesting can generally be defined as ableist to one degree or another. The past few years are no exception, and this last year reached levels of ableism that repeatedly enraged and terrified me. I’ve been disabled for three decades, my entire life. I’m no stranger to discrimination, hatred even, on the basis of a person’s disability. But the absolute disregard for the lives of disabled people I’ve witnessed in the last year is on a whole other level than anything else I’d personally encountered. The worst part is it stems from a complete lack of empathy and an almost prideful ignorance of the disabled community.

 

People have talked a lot in the last year about what they’ll do “after quarantine is over”, or compared their day-to-day to what it was like before the pandemic started. It took me a while, but I finally realized why conversations like that bothered me. For those people being separated from others, unable to go places, feeling secluded all started with social distancing at the beginning of the year. But for me, and many other disabled people, quarantine life hasn’t differed much from daily life before COVID-19.

 

Disabled people already live largely secluded lives. So much of society is inaccessible to us. Transportation is either non-existent or difficult to arrange. Most public buildings still aren’t fully accessible, the same is true for most homes.

 

Beyond accessibility, there is the issue of not having people to connect with in the first place. Family and social circles often shrink or in some cases dissolve completely if non disabled loved ones decide a person’s disability makes them too difficult to deal with. In other cases disabled people may cut ties with harmful people if the relationship has become toxic and they are able to leave.

 

For these and a myriad of other reasons the daily lives of disabled people resembled life in quarantine long before social distancing became the norm. Personally my reasons for being largely homebound, aside from a lack of accessible transportation, had to do with dealing with poor physical and mental health, both of which had markedly improved before the pandemic. But both before the pandemic, and even now to an extent, there have been people I’ve been able to rely on for help when I needed it.

 

I recognize the privilege of my situation in saying that. So many disabled people don’t have in-person support, forcing them to find other ways to meet their needs and build relationships. The internet is often a vital tool for accomplishing both. Online, disabled people can find other people who can relate to their experiences; they form relationships, friend groups, whole communities. This has been true for me as well, even more so in the last few years. The people I’ve met online are a lifeline that’s become vital to me.

 

Another literal lifesaver for myself and others is the ability to shop online, order food, set up delivery of medications or other supplies and engage in other necessary communication. Quarantine saw the use of these and other tools and services boom as non disabled people also took advantage of them. Then there was the sudden availability of work-from-home, online learning and telehealth, all allowing the world to, hypothetically, become more accessible to disabled people than it had been before. In a time when society was experiencing en mass how solitary the disabled existence could be, the world became a little more open to us.

 

I say a little more, because even with mask mandates and stay at home orders, too many people decided to risk their lives and the lives of others by refusing to take the proper precautions. From the beginning, politicians and journalists alike repeated the damming line “only the vulnerable are at risk”. Too many people decided that didn’t mean them, so they didn’t care. This endangered those who should have been protected by virtue of their living situation. Yet COVID-19 cases in long-term care facilities account for nearly half the reported deaths.

 

Now with the vaccine being distributed there’s even more talk of “when things get back to normal”. No one seems to realize the “normal” they’re talking about is most likely lost. Oh sure some things will go back to the way they were, but it will be to disabled people’s detriment. Telehealth is already being phased back out. It wouldn’t surprise me if work-from-home and online learning opportunities disappeared as well. The opportunities that could have been open to disabled people will vanish like they never existed.

 

This is how society seems to work. Regardless of the work of the disabled community to fight for our rights and equity, we are always the second thought, “other”, expected loss. In this way disabled people are more easily forgotten about, out of sight out of mind. Turns out marginalization is a pretty effective practice to guarantee social distance.

 

I recognize how bitter and jaded I’m coming across saying all this. Let me assure you I’m less angry than I sound. Mostly I think I’m afraid. I’m afraid that what progress we’ve made might be all there ever is, and that all of it could be stripped away. Even more, I’m afraid no one else cares.

 

We’re facing possibly the largest disabling event in recent history and it seems we haven’t grasped the implications of this as a collective yet. People have already been permanently disabled by COVID-19 and guaranteed there will be scores more. The long-term effects are still largely unknown. We don’t have the infrastructure or other resources to support the current disabled community, let alone the influx of newly disabled people we’re about to see. This will leave people in deeper need of aid and more secluded from that aid than ever before.

 

The disabled community is one of the most resilient, supportive and dynamic I’ve ever been a part of. The accomplishments of my disabled peers is continuously a source of joy and pride for me. But I worry about our ability to cope with the magnitude of the loss our community has sustained from COVID-19 and the knowledge that so many considered that loss acceptable in exchange for returning to their “normal”.

 

Simply put, we were told from the beginning to maintain social distance, so I will. I won’t go away completely, and I refuse to be silent. But putting distance between myself and people bent on doing me harm feels like the best tool for self-preservation I have, at least for now.

I’ve been wondering if the answer isn’t staring me right in the face. The best way to cope post-COVID-19 may be to continue with safety procedures. For instance, no gatherings of large groups of people, especially any who were ok with sacrificing me and others like me. When out in public, wear a mask of calm and collectedness to hide simmering rage at ableists I encounter. And most importantly, staying a minimum of six feet away from t? said ableists to lessen the likelihood of arguments that could escalate.

Syd Chasteen: A white female presenting person with short, asymmetrically cut, dark hair and dark eyes. They are, visible from the shoulders up, wearing a tie dye shirt, the blue and green parts of which are visible, and a brown leather cord around their neck &
Syd Chasteen

Name: Syd Chasteen

Bio: I am a queer disability justice activist born, raised and living in southern Indiana. I am a 30 year old, full-time wheelchair user with Spina Bifida and Hydrocephalus, and self diagnosed Autistic. I am a graduate of Ball State University and I’ve been married for 6 years. I started my blog, BifInMediasRes.com as a way to share my experiences as a disabled person. As an advocate for both myself and the wider disabled community I am always looking for ways to improve my advocacy and connect with others in the community.

Blog: bifinmediasres.com

Social Media: @BifInMediasRes on Twitter

(she/her they/them disabled)