It’s not easy for people to find speakers to talk about disability and chronic illness. This can lead to panels with underrepresentation for a variety of marginalized groups – POC, trans/GNC, abuse/trauma survivors, LGBT+, etc. I want to change this.
My hope is that this page will help to serve as a directory of people around the world willing to speak to a variety of intersections with disability and chronic illness – and better representation for us all.
Bio: Kirsten Schultz is a sex educator and writer currently living in Wisconsin. As a Systemic JIA patient since age 5, she knows how hard it can be to live a full life while dealing with health issues. That’s why she works most closely with other patients, helping them to find workarounds, explore themselves, and discover their lives after diagnosis. In the last three years, Kirsten’s focus has turned towards the intersections of self-love, relationships, and sexuality. This piece of our lives is often ignored in society, but that’s even truer for patients dealing with chronic illnesses and disabilities. Over the last decade, Kirsten has worked with organizations all around the world including universities, pharmaceutical companies, academic conferences, and patient organizations. In addition, her work has been featured in articles from publications such as US News, Broadly, Teen Vogue, and Metro UK. Kirsten holds an MS in Healthcare Administration from Utica College. When she’s not working or traveling, she enjoys spending time with her husband and their two guinea pigs. You can learn more about her and her work at kirstenschultz.org.
Website/social media: chronicsex.org, notstandingstillsdisease.com, kirstenschultz.org, twitter.com/chronicsexchat, twitter.com/kirstie_schultz, instagram.com/kirbir, instagram.com/chronic_self_love, pinterest.com/chronicsex, pinterest.com/kirbir88, facebook.com/chronicallysexy, facebook.com/notstandingstillsdisease, facebook.com/kirsteneschultz
Areas of interest/expertise:
Accessibility needs: Low-perfume spaces, limited fluorescent lighting (or notice that there is some so I can prepare)
Location: Madison, Wisconsin, USA
Bio: Andrew Gurza is a Disability Awareness Consultant and Cripple Content Creator whose written work has been featured in Daily Xtra, Gay Times UK, Huffington Post, The Advocate, Everyday Feminism, Mashable, and Out.com, and several anthologies. He has guested on a number of podcasts including Dan Savage’s Savage Love and Cameron Esposito’s Queery. He has spoken all over North America on sex, disability and what it means to be a Queer Cripple. He is also the host of the DisabilityAfterDark: The Podcast Shining a Bright Light on Sex and Disability available on all podcast platforms. You can follow the podcast @disaftdarkpod You can find out more about Andrew by going to www.andrewgurza.com & connecting with him on Twitter @andrewgurza.
Website/social media: andrewgurza.com, twitter.com/andrewgurza, twitter.com/disaftdarkpod
Areas of interest/expertise: LGBTQ2S & disability; lived experience of disability, sexuality and disability
Accessibility needs: PCA required, flights and expenses paid by org, powerpoint, etc.
Location: Toronto, Ontario, Canada
Bio: I am a disabled woman in Scotland, with a background in science and politics. I have both physical and mental disabilities, which means I have had a lot of experience dealing with the negative side of medicine and how it treats women in pain. It took 15 years to get to the diagnosis of EDS, which I had to fight to get assessed for.
Website/social media: https://graniteandsunlight.wordpress.com/
Areas of interest/expertise: Science, politics (particularly UK/Scotland), depression, EDS, disability rights, the democide of disabled people in the UK.
Accessibility needs: I have mobility issues and walk with a stick, though if I am having to walk a long way I might need to bring my wheelchair. I have some trouble with stairs.
Location: Aberdeen, Scotland
Bio: Kathryne Husk is an award-winning and nationally exhibited artist, poet, and activist. They were the recent subject of the short documentary “Kathryne: Uncensored”, and their artwork and poetry has been published in various literary journals and art magazines. Kathryne’s activist work has lead to numerous lectures and presentations on disability rights and issues facing the disability community. Their current focus is breaking down the barriers of how disabled bodies are viewed in contemporary art and in society, and bringing awareness to the lack of accessibility within the Kansas City arts scene. They currently create out of their home studio in Kansas City where they live with their spouse and toddler child.
Website/social media: Kathrynehusk.weebly.com instagram.com/kathrynehusk, facebook.com/artofkathrynehusk
Areas of interest/expertise: Queer artists, disabled artists, inaccessible art scenes/neighborhoods/communities
Accessibility needs: Wheelchair accessible space
Location: Kansas City, Missouri, USA
Cyree Jarelle Johnson
Pronouns: they/them/theirs or anything respecful
Bio: Cyree Jarelle Johnson is a black, nonbinary trans poet, essayist, and editor from Piscataway, New Jersey living with Systemic Lupus Erythematosus and an autism spectrum disorder. They are a Poetry Editor at The Deaf Poets Society, and a candidate for an MFA in Poetry from Columbia University. Their work has recently appeared in THE WANDERER and HuffPost. Cyree Jarelle’s work has been supported by the Astraea Foundation, Culture/Strike, the Davis-Putter Scholarship Fund, and the Leeway Foundation.
Website/social media: cyreejarellejohnson.com twitter.com/blackTiresias
Areas of interest/expertise: Systemic Lupus, blackness, bisexuality, nonbinary stuff, Autism, sexual violence/domestic violence
Accessibility needs: Meeting people one at a time, allergic to latex (this includes balloons so they cant be in spaces I’m in), other dietary needs
Location: Brooklyn, New York, USA
Bio: I am a chronic illness and disability writer and advocate. I’ve lived with autoimmune arthritis since I was 4 years old and used a wheelchair since my teens. My focus is on living well with a chronic condition.
Email: lene at yourlifewithra dot com
Website/social media: www.theseatedview.com twitter.com/theseatedview facebook.com/LeneAndersenwriter
Areas of interest/expertise: rheumatoid arthritis, juvenile arthritis, disability, accessible design, food allergies, PTSD, fibromyalgia
Accessibility needs: need wheelchair accessibility, accommodation for food and other allergies
Location: Toronto, Ontario, Canada
Bio: So I am hard of hearing, which is something I’ve lived with my entire life. I hear 60% in my “good” ear, and 15% in my bad ear. It can make certain things such as going to dinner or meeting new people a little challenging since a lot of people don’t have the patience to repeat what they said. I also am a survivor of sexual assault, I was raped my freshman year of college by a stranger. I don’t remember a lot of the night but I do remember bits and pieces. After my assault I dealt with anxiety and depression and PTSD and found ways to cope with those.
Website/social media: twitter.com/k_clay13 instagram.com/k_clay13
Areas of interest/expertise: I would say speaking on the trauma that I experienced and also speaking up for hard of hearing individuals. Im not trying to speak for the Deaf community but I can shed some light on certain topics.
Accessibility needs: Closed caption devices
Location: Des Moines area, Iowa, USA
Thyra Calvert, MSc, RPQ, CCC
Bio: I am a white, physically disabled, pansexual, cis female. I have experience as an educator (university level) and a relational psychotherapist. I run my own private practice in the Waterloo Region. I am also developing workshops for mental health professionals who want to develop competency working with I’ll and disabled clients. I am also on the Guelph Sexuality Conference planning committee. I hold great interest and experience in working with folks/doing research around the intersections of disability and sexuality.
Website/social media: www.thyracalvert.com
Areas of interest/expertise: Sex, disability, chronic illness, mental health, psychotherapy, sounselling, mental health providers.
Accessibility needs: Accessible (nearby) parking, chair or stool on which to sit when speaking, nearby access to washroom
Location: Waterloo, Ontario, Canada
Bio: My name is Xena, and I am a college student who uses a service dog for medical alert, control of PTSD symptoms, and mobility assistance. I have been paired with my current service animal since I was 16, and often experience the issue of being seen as young, and physically able, which leads people to believe that I am either ‘faking’ my need for my service dog, or that I am not disabled in anyway. I am often confronted by people who assume they know much more about my physical health, and my dog, than I do. Using a service dog is unique to the world of disability, as they act as medical equipment, but are obviously living animals who cannot be treated as non-living equipment. So many people have grown up with or around dogs, and have trouble viewing them as working animals. Pairing this with my often invisible disability means I am frequently open to ridicule and confrontation in public, even with the expectional behavior and task-performance of my dog.
Website/social media: N/A
Areas of interest/expertise: Service Animals, PTSD, chronic neurological illness
Accessibility needs: Ramp/elevator
Location: Northeastern United States
Pronouns: she/her/hers or they/them/theirs
Bio: In a single day I can go from one doctor telling me there’s nothing wrong with me to another doctor telling me that my case is so complicated that there’s nothing they can do for me, and to not come back. While in a drugstore, I had one woman loudly announce that there was a trash can in front of me; of course, I knew that – I was waiting for her to pass so I could go around the trash can, but she could see that my eyes were nearly paralyzed shut, so assumed I couldn’t see at all. Another time a man took it upon himself to grab my arm and physically pull me on an elevator simply because I was waiting my turn to enter. It is such a strange existence for doctors to claim I’m in perfect health, and for strangers to recognize that I’m not. I’ve had to navigate doctors, hospitals, Social Security Disability, short term disability, long term disability and health insurance on my own. The U.S. healthcare system is daunting for those lucky enough to only have to use it once in a while; I’ve been chronically ill my whole life thanks to my autoimmune soup genes, so my experience in the system as a 40+-year-old has been a lot more intense. I’ve had many doctors tell me that my rare disease is psychosomatic, even Munchausen’s, even when my MRIs, CT scans and blood tests have shown blatant results. I go on adventures whenever I can catch a break, and I’ve had plenty of Mr. Right Nows while searching for Mr. Right. Having alopecia universalis makes for some awkward situations but I also haven’t had to do any body hair removal for a few decades – except for a few wisps on my big toes. That seems like the ultimate insult to me. Why couldn’t I have kept my eyelashes?
Website/social media: thesickandthedating.com twitter.com/kiwifreund
Areas of interest/expertise: Chronic Illness, Rare Disease, Alopecia Universalis, Dating w/Chronic Illness, Dating w/Alopecia Universalis, Navigating Healthcare w/Rare Disease, Managing Medical Records w/Rare Disease, Medical Sexism, Hydrocephalus
Accessibility needs: Right now I can’t walk more than 2 blocks, and can’t navigate street signs/landmarks by myself. Also can’t be upright for more than 2 hours tops, have to be sitting rather than standing, and can’t speak non-stop for greater than 20-30 minutes without breaks.
Location: St Paul, Minnesota, USA
Bio: Heather Corini Aspell is a visual storyteller, artist, and patient advocate. She lives in Los Angeles, California with her two wacky cats, Samson & Delilah. Heather has lived as a medical mystery with multiple complex chronic illnesses since childhood. Although her precise diagnosis is always in flux given that her rheumatologist thinks she likely has multiple systemic autoimmune/autoinflammatory diseases her primary conditions are best classified as Systemic Juvenile Idiopathic Arthritis (also referred to as Still’s Disease), and/or Lupus, and/or Dermatomyositis in addition to endometriosis, migraines, gastroparesis, hypogammaglobulinemia & more. Heather received her B.A. in English Literature from the University of Washington in 2007 and her J.D. from the University of California, Hastings College of the Law in 2010. After graduating from law school, Heather practiced employment litigation at a national law firm in Los Angeles. Despite her best efforts to juggle her career with the demands of her health, she had to stop working in 2014 to focus more on caring for her health. Since then, Heather has redirected her skills as an attorney and creative spirit towards patient advocacy. With 20+ years of experience as a “professional patient,” she has encountered countless barriers in the healthcare system. Since becoming visibly disabled (she currently uses a walker) and unable to work she has also experienced a great deal of misunderstanding from society at large. Heather uses her social media presence, photography, and other art to challenge these misunderstandings by expressing the realities of living with multiple chronic illnesses and disabilities as a thirty-something. Heather also uses her art and photography to spark conversations about barriers to accessing quality medical care, improving the doctor/patient relationship, difficulties faced in obtaining a diagnosis, ableism/disability discrimination, and many other issues relating to disability and chronic illness. Using social media, she shares unapologetic “selfies” and other images featuring her using her mobility aids and engaging in everyday activities relating to caring for her chronic illnesses to normalize the idea that anyone can be chronically ill or disabled – even a mostly healthy-looking young(ish) adult. Ultimately, Heather hopes that by sharing her own story, she can help others living with disability and chronic illness feel less isolated!
Website/social media: www.heathercoriniaspell.com instagram.com/haspell twitter.com/hcorini
Areas of interest/expertise: Patient experience, transition from child with chronic illness to adulthood, and disability law and rights, art and photography as a way of communicating the experience of being a patient with chronic illness and/or disabled, medical art, and changing the perceptions of what it means to be disabled and/or chronically ill using art and photography.
Accessibility needs: Can’t navigate stairs
Location: Los Angeles, California, USA
Bio: Rheumatoid arthritis and gastroparesis patient for 15 years, parent for 4 of those years. Also experienced with SIBO, panic disorder, thoracic outlet syndrome, costochrondritis and more. Occupational therapist (OT) specializing in pediatrics and willing to speak on the role of treating the whole person with a chronic illness.
Website/social media: theenthusiasticlife.wordpress.com facebook.com/cherylcrow
Areas of interest/expertise: Rheumatoid arthritis, gastroparesis, occupational therapy
Accessibility needs: N/A
Location: Seattle, Washington, USA
Bio: Straight passing white woman with a poor childhood, anxiety, depression and severe Crohns.
Website/social media: tiffanynicolexo.blogspot.co.uk twitter.com/tnb_xxo
Areas of interest/expertise: Crohns/IBD, depression, anxiety
Accessibility needs: Need to use toilet very often
Location: Essex, UK
Pronouns: she/her/hers and they/them/theirs
Bio: I am a pansexual, cis-gendered female who has an uncommon form of Muscular Dystropy. I am a survivor of cancer and I live with chronic pain and anxiety . I am somebody who loves a challenge. I like the excitement and process of overcoming obstacles, particularly when it’s not something that seems immediately possible. I was born with a rare form of Muscular Dystrophy which means that I face huge physical challenges. My support people, who I employ, effectively act as my arms and legs. I rely on a machine that helps me breathe at night and I use an electric wheelchair to get around. Within the last year I has travelled to the United States, to attend a social change focused convention called VidCon. Attending events like this tie in with my endeavors for 2018 – to expand my presence as a public speaker, advocate, and educator on issues relating to courage, inclusion, and positivity. I have spoken to numerous community groups, including tertiary students at New Zealand universities, about disability awareness and values driven work. On my Facebook page it says, “all of my experiences have helped me to learn a lot of things about life and people, and my studies have enlightened me on ways to use my experiences to help others realize their potential”. To further these ambitions I have completed a Diploma in Life Coaching, which compliments the Social Sciences degree I have. I also have a growing interest in other therapeutic techniques that can help with anxiety and pain management after my own struggles with these issues. Shifting out from my parents’ home in 2005, I earned a Bachelors degree at Waikato University, graduating in 2009. Then I worked in community support focused positions in large organizations, and a love of theatre led me to direct a play in the 2011 Fringe Arts Festival. I have built up a large catalogue of self-made online videos on YouTube over the last couple of years. Many of them express my perspectives and experiences on issues relating to disability with humor and fun shared along the way. I have also published a teen/young adult fiction in 2016. https://www.youtube.com/user/tmm35magpie https://www.facebook.com/teganmeetsworld22/ http/amzn.to/2g2Ci3W (novel)
Website/social media: youtube.com/user/tmm35magpie
Areas of interest/expertise: Presentation topics I am able to present on various topics relating to working with those who experience disability and sharing my own personal experience of living with a significant physical impairment. The previous work I have done as a presenter and advocate has involved working with classes at AUT (nursing), Waikato University (teaching school), talking to “Special Education classes” at Hillcrest High School and other secondary and tertiary school groups. I have also worked closely with community groups that support people with disabilities and their families, as well as at various conferences and forums. The range of topics covered by my presentations fall into four broad categories: Living examples, Future possibilities, Hobbies & Self-expression and Identity Awareness.
Accessibility needs: Access for power wheelchair, access for my support person to attend as well, good sound system as I have a quiet voice, a quiet zone so I can relax if my anxiety gets too high
Location: Hamilton, New Zealand
Annie Segarra (Annie Elainey)
Pronouns: she/her/hers and they/them/theirs
Bio: Annie is a queer disabled woman of color that creates online content about her thoughts and experiences through her Intersectional perspective. Her work consists of online video on YouTube as well as writing on social media and her blog, she is in a long-term process of writing two books.
Website/social media: youtube.com/theannieelainey twitter.com/annieelainey annieelainey.tumblr.com instagram.com/annieelainey facebook.com/ann.e.segarra
Areas of interest/expertise: Disability, Chronic Illness, Ehlers-Danlos Syndrome, LGBT, Latinx, Body Image, Mental Illness, Body dysmorphic disorder, Accessibility
Accessibility needs: Wheelchair accessibility
Location: Miami, Florida, USA
Bio: I have cerebral palsy and a severe spinal curvature. I am interested in sharing my experiences of neurological injury and chronic pain. I also have experience of mental illness. I studied for an mres degree in contemporary portrayals of chronic illness and disability and I am well versed in theoretical knowledge of disability and the disabled experience. I have published reviews and articles, and I am always keen to share my experiences in the hope of rebuking the ‘disability as tragedy’ narrative that permeates much of western culture.
Website/social media: Nosuperhero.co.uk twitter.com/htlcy
Areas of interest/expertise: Neurological difference, cerebral palsy, spinal curvatures, mental illness including anxiety depression and OCD, chronic pain
Accessibility needs: Access to a chair at all times and the understanding I may need to change my position
Location: Manchester, UK
Pronouns: she/her/hers and they/them/theirs
Bio: I am the co-founder and managing editor of Hooligan Magazine, a publication created for the sake of art, authenticity, and ambition. On top of working a freelance job as well as an IRL job at a bookstore (that is incredibly understanding of my illnesses), I’m also a student who runs a publication. I’m almost finished with my undergrad, but being chronically ill while being an ambitious person has taken a toll on me. I’ve suffered with chronic migraines since I’ve been 12 years old and they’ve only increased in severity and consistency as the years progressed. A few years ago I was diagnosed with chronic Candidiasis, which is an imbalance in the gut that triggers overgrowth of yeast throughout the body, which triggers more migraines, brain fog, depression, anxiety, and fatigue. On top of that, I’ve been dealing with more health issues, probably due to my weakened immune system (caused by candida). All of this is, for me, a lesson in patience, but it also teaches me perseverance. I am inspired by people who are chronically ill and continue to do all that they want to do while valuing and priotizing their health & capabilities.
Website/social media: Hooliganmagazine.com twitter.com/rivkayeker instagram.com/rivka.yeker
Areas of interest/expertise: I am grounded by forward thinking & coping. I work in art management, publicity, and in books. I’m also a writer & and an editor. My writing ranges from short fiction and poetry to analyses on media to essays on the relationship between the body and mind.
Accessibility needs: As long as I have my meds and food / water, I am capable of getting places.
Location: Chicago, Illinois, USA
Bio: Alex is a white genderqueer, disabled Autistic person who grew up and currently lives in rural Ontario (geographic marginalization is significant in the context of Canadian healthcare).
Website/social media: alexhaagaard.wordpress.com instagram.com/uninspiringcrip twitter.com/alexhaagaard
Areas of interest/expertise: Healthcare justice, medical epistemology, inclusive service design
Accessibility needs: Wheelchair access, quiet room availability
Location: Rurual Ontario, Canada
Bio: I spend time learning about and educating others re: disability rights, and use my background in education (specifically language) to talk about how our tacit, unexamined ableist biases affect our language and thus our relationships with others. I have Ehlers Danlos Syndrome III, all its friends, fibromyalgia, PTSD, and OCD.
Website/social media: twitter.com/painandcats_
Areas of interest/expertise: Disability, activism, queer issues, nonbinary/agender trans issues; education.
Accessibility needs: Currently I am using an EZ Lite Cruiser (automatic wheelchair) so would need appropriate ramps.
Location: Tucson, Arizona, USA
Bio: Errol is a 22 year old autistic and disabled student, editor and writer based in Newcastle, UK. Having set up a disability community, representing disability as a bisexual within his LGBTQ+ community at university, and leading an upcoming mental health conference, Errol’s work focuses on disability in the political and media sphere as well as discussing disability within the LGBTQ+ sphere.
Website/social media: ErrolAKerr.wordpress.com twitter.com/criptacular
Areas of interest/expertise: Autism, EDS, Hypermobility, Disability Research, LGBTQ+, Bisexuality, Pansexuality, Media, Politics, University
Accessibility needs: I am ambulatory however avoiding stairs is preferable.
Location: Newcastle, UK
Bio: A genderqueer semi-verbal autistic person with various other neurodivergences.
Website/social media: twitter.com/xandernaut
Areas of interest/expertise: Autism/transgender issues/neurodiversity and accessibility
Accessibility needs: Quiet space to retreat into before/after speaking
Location: Michigan, USA
Bio: Q is a chronically & terminally ill performing artist, non-binary queercrip, radical-vulnerability advocate & activist, & member of the Orchard collective house on the unceded, traditional, ancestral territories of the Musqueam, Squamish, & Tsleil-Waututh peoples.
Website/social media: https://www.disabledwriters.com/profiles/quin-eli-lawrence-q?rq=quin
Areas of interest/expertise: disability, chronic illness, terminal illness, assisted suicide, cripple punk, ableism, internalized ableism, grief, loss, performing art, spoken word, artist networking
Accessibility needs: wheelchair accessibility, scent reduction, minimal use of fluorescent lights
Location: Vancouver, British Columbia, Canada
Bio: 40s, nb femme PoC power wheelchair user with Cerebral Palsy, Endometriosis, Anxiety and depression and Osteoarthritis. Sexual Assault Survivor.
Website/social media: facebook.com/fvmotivation
Areas of interest/expertise: Sexual Emotional connection building for Disabled people
Accessibility needs: Ramps, accessible bathroom, lifts, vegan/gluten-free
Location: South Melbourne VIC Australia
Bio: I’m a fat-positive feminist and activist who is interested in discussions surrounding the intersections of trauma/ abuse and self-help. I believe the dissection of gender and sexuality is a positive path to developing loving relationships with the spiritual self and the body. I’m queer and I like interior design and adorable baby animals.
Website/social media: twitter.com/femmesplaining
Areas of interest/expertise: PTSD, Binge Eating Disorder, Fat Positivity, Fibro + Chronic Fatigue, Depression, Sleep Disorders, LGBT+
Accessibility needs: N/A
Location: Raleigh, North Carolina, USA
Bio: I am a Crohn’s Disease patient and Chronic Illness advocate who writes about my experiences living with an incurable, invisible disease. I also work extensively with the Crohn’s & Colitis Foundation, mentoring younger patients and leading fundraising efforts.
Website/social media: SickerThanYourAverage.com twitter.com/sammmreid instagram.com/sammmreid
Areas of interest/experise: Chronic illness, patient advocacy in politics, and Crohn’s Disease/IBD
Accessibility needs: None as of now
Location: Chicago, Illinois, USA