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.) 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.

This I Believe

By A’niya Williams, high school senior

I believe in independence, self love and equality. All through elementary and middle school I got bullied and people would pick fights with me for whatever reason I didn’t understand because I was always so quiet. That made me very insecure and depressed. I never really talked to anyone about the issues I was having because I felt like no one could help. When I got to high school I got a new start, and started to see my value, and what I am capable of. This is why self love is so important because if you love and respect yourself, nobody can tell you different. Self love is also not letting another person’s needs come before yours, and not settling. I believe this is very important because if you don’t love yourself it is very hard to love someone else.

When I was younger I was alway more on the dependent side. When I started to get a little older and started having relationships I would depend on them to make me happy. Then when I moved away my whole attitude and perspective changed. I got a job and started to do as much as I could for myself so my mom could have a little less stress. Also it felt good to not have to ask for something that I wanted.

I believe independence is important because you can’t always rely on someone to do everything for you, or make you happy. There is a time in everyone’s life where they have to go out into the world and live their own life. It is a really good feeling because you know u did it on your own.

Lastly equality. Equality is very important to me because when I grew up there wasn’t a lot of it especially in school. Growing up in school as a minority was very hard. I was one of few mixed/ black race at my schools. Teachers would treat me differently and I never really put the pieces together until later in my life. I believe equality in the USA is fake and it’s just here to make people think everything is equal. In reality nothing is equal, because no one is given the same thing when they are put on this earth. Equality is very important to me because it is a right that everyone should be given.

This is an image of three heart shapes hanging from strings.

tw. Ableism

My body doesn’t work – they say –
to please the male gaze.

My body doesn’t work
to cope with the 8h-per-day
working schedule.

My body doesn’t work
to be drafted,
to give birth
or to please
whoever demands
to be pleased.

My body is a dividing line
between my light
and the world.

But my body works
to dance, badly and clumsily,
under the rain
when nobody is watching.

It works
to punch,
to save itself.

It works
to grow fruits,
to get muddy,
to taste the wind.

My body works
as a lair
for non-normative
pleasures.

While my sex is a hibernating winter,
my nerves are a hieroglyph
of orgasms
randomly spread
throughout the skin.

My body doesn’t serve any purpose,
it doesn’t serve anybody
because it is not built for serfdom.

No body is.

My body is built
to enjoy witchcraft,
to hug the others,
to give birth to fantasies,
to swallow life until it’s over.

My body serves ME.
I am its purpose.
It works to heal me.
To heal with and for my people.

A purpose for which society,
the same one that has always named
and built us disabled,
has never been able
at all.

Title: TW. Ableism.
Poet Name: Cénix C. Callejo.

Long story short, this poem was written in 2017, at a homeless day shelter, to remind myself that I –a violence survivor- as well as any person in any difficult or similar situation, was worthy and deserved the job I was denied, the home I wasn’t able to afford and the safety I wasn’t guaranteed with. I hope others can find comfort in it and it can help them to navigate their own paths whenever it gets tricky, and I also hope it can be a tiny contribution towards a much needed social change.

Callejo García C. C. (2020). TW. Ableism. Disability Justice & Violence Prevention Resource Hub. Retrieved from: https://indisabilityjustice.org/insert-publication-link

Name: Cénix C. Callejo.
Pronouns: They/them.

Bio: Cénix is a biologist and an environmental activist. They are a MSc in Biology, a Wildlife Rehabilitator and Environmental Educator Specialized in Grassroots Community Conservation, at different farmers and indigenous-led conservation projects. They have studied and volunteered/worked within the Environmental Field at Spain, UK, Greece, Peru and Ecuador.

Besides Wildlife Protection, Cénix has also been and is actively involved within several activism fields, regarding Mental Health, Disability, Survivorship, Homelessness and Transfeminism, amongst others.

After several episodes of male violence and mobbing linked to a severe work accident at their last job placement in 2019, they are currently being hosted at Spain, recovering while working and expanding their studies, seeking to expand their working opportunities in order to be able to fully afford again their own room and life expenses.

Photo:

[PHOTO DESCRIPTION: A frontal picture of Cénix, a white person with black curly hair to the shoulders, from head to knees. They are at a forest. Their right hand is grabbing a branch tree, their left arm is hanging. They are wearing grey sports trousers, a colourful shirt with flowers and a pink sweater. They are smiling and wearing black and white glasses. They are also wearing a red fanny pack with a pin of a yellow daffodil. There is a big rock behind them and green trees at the back.]

Where to read more: You can find more about their poetry (in Spanish) or contact them at their Facebook Page: https://www.facebook.com/Oniroteca/

Thrills and Chills: A Glance at Bills Filed during the 2021 Session

If you’re like me, you’re already sick of political chatter this year. Extremism from both sides of the political aisle is the greatest I recall during my lifetime, and politics seems to be becoming less collegial. Yet, rather than work toward compromise, partisans are turning inward to isolate themselves or “canceling” those of whom they are critical. I have always enjoyed browsing the marketplace of ideas and considering all potential policy solutions to resolve an issue. And Lord knows, I have a lot of issues!

I am not alone; the disability community, too, could be specifically affected by a number of bills introduced in this year’s session of the General Assembly. This blog post is a curated list of some of the bills that I hope will be passed, as well as the bills I view as particularly detrimental to the interests of the greater disability community. I’ve also thrown in some bills that seem just plain weird. In the interest of time, have limited myself to three topics per category. Thus, the good, the bad, and the ugly of the 2021 Session:

The Good

HB 1081 – Medicaid Self-Directed Care. Yes! This bill would require the Family and Social Services Administration (FSSA) to submit a State Plan Amendment to the federal government, requesting that the Indiana’s Medicaid program participate in the Community First Choice Option to give more Medicaid enrollees access to self-directed care. Currently, Indiana only allows some participants on its Aged and Disabled Waiver limited options to receive some attendant care services in a self-directed manner. This bill, if enacted, would presumably provide many more Hoosiers much more autonomy over their activities of daily living.

HB 1092 – Tax Credit for Contribution to ABLE Accounts. I cannot think of a single reason anyone would oppose this bill (except, perhaps, for Ebenezer Scrooge, himself). If passed, this bill would provide a state tax credit to any taxpayer contributing to an ABLE account in the state. The tax credit would be the lesser of: (1) the total amount of contributions made by the taxpayer in the taxable year; (2) $1,000 (or, for a married person filing a separate return, $500); or (3) the amount of the taxpayer’s adjusted gross income minus allowable credits. This bill is particularly beneficial to working individuals with ABLE accounts, as they can benefit from funds added to their accounts and the tax credit.

Multiple bills would keep and/or expand telemedicine/telehealth in Indiana, including, HB 1286, HB 1347, and SB 3. During the pandemic, many Hoosiers learned what people with disabilities already knew: sometimes it’s difficult or impossible to go out about for health care purposes. Although having complete choice as to whether one meets in person or remotely would be ideal, at least those with transportation difficulties now have at least one avenue to receive needed medical care.

The Bad

SB 12 – Service Dog Endorsement on Operator’s License. This bill worries me more than any other, especially as a service dog owner. If passed, the Bureau of Motor Vehicles (BMV) would have to ask those obtaining or renewing driver’s licenses whether they voluntarily want their license to describe the use of their service animal. Critically, the bill defines “service animal” differently than federal law does. Moreover, the BMV has no mechanism to truly know whether a service animal is legitimate. For these reasons, the public will be more confused than ever about service dog laws. In addition to navigating that confusion, service dog handlers will also likely encounter more fake service dogs than ever. Please let Senator Kruse know that people with legitimate service dogs denied entry to public facilities already have resolution methods. SB 12 would only make the problem worse.

Several bills, including HB 1295 and HB 1375, for the Elimination of Gun-Free Zones. Don’t get me wrong; I generally be support Second Amendment and believe the world would be a lot safer if everyone was packing. However, there are a few places where guns do not logically belong, including State-operated facilities for individuals with mental illness. I am not associating mental illness with criminal violence. However, I am concerned that if individuals working in these facilities bring weapons onto the campus, the risk of suicide and other forms of bodily harm is needlessly increased. As a State employee who is physically unable to wield a gun, I am also uncomfortable with the idea that frustrated members of the public could legally carry guns when coming to confront me or my colleagues.

Another batch of bills, including HB 1315, HB 1437, and SB 369, would allow government bodies to meet and conduct business remotely. As noted when discussing the telehealth bills, remote participation is usually a nice option for people with disabilities. However, government bodies do not seem as attuned to the needs of people with disabilities as do medical providers (and, as those using American Sign Language can certainly attest, medical providers still fall short granting reasonable accommodation requests). Just trying to watch the 1102 Commission meetings during the coronavirus pandemic was an ordeal, even though the subject matter was intellectual and developmental disability services. Thus, I am concerned that if more government business is conducted electronically, people with disabilities will be shut out of the conversation more easily. Not all platforms are accessible to individuals with various disabilities, not everyone has access to the Internet, etc.

The Ugly

HB 1333 – Cultural Awareness and Competency Training. I appreciate the intention behind this bill, which is to ensure that healthcare professionals have ongoing cultural awareness and competency training – including disability-related training. The problem is that the Department of Health and the Office of Minority Health must develop the training. I don’t know about you, but I would much prefer the Governor’s Council on People with Disabilities or Indiana Disability Rights to provide disability awareness and competency training.

SB 286 – Disability and Rehabilitative Services. This bill provides criteria as to what individuals comprise the Division of Disability and Rehabilitative Services (DDRS) Advisory Committee. Two things about this bill bother me. First, only two self-advocates are permitted to serve on the Committee, although its work pertains exclusively to people with disabilities. Second, and the reason why I categorize this bill as “ugly,” is because it is disability-specific, limiting membership to those involved with or having intellectual and developmental disabilities. As we know, DDRS serves people who are blind, people who are Deaf or deaf, people with physical disabilities, and people with mental illness, in addition to people with intellectual and developmental disabilities.

A handful of bills would, if passed, raise the minimum wage, including HB 1345 and SB 334. Importantly, neither of these bills would change the definition of “employee” in the Indiana Code. This means that, even if one of these bills went on to increase Indiana’s minimum wage, it would still be lawful to pay people with disabilities working in sheltered workshops as little as one cent per hour. I encourage you to reach out to these bills’ sponsors and see if either would be willing to see wages increase for all Hoosiers.

I promised to be brief, which has precluded me from discussing other important bills. I also encourage you to check out: SB 74, which would make it illegal for an employer to require an employee to vaccinate; SB 378, regarding electronic monitoring in nursing homes; HB 1261, which would require places of public accommodation to use closed captioning on all televisions in use; nearly every voting bill; and SB 202, SB 206, and SB 229, which would generally preclude nursing homes from excluding visits from all family members during a public emergency. Although this might ban me from social media, I have to say it: Keep fighting for disability rights!

(Picture of Emily Munson wearing green V-neck shirt and green beaded necklace. She is smiling and has shoulder length black hair) Emily Munson, 36, is an Indianapolis attorney with spinal muscular atrophy, type 2. She enjoys advocating for disability rights, reading, and cuddling with her service dog, Rigby.