Share
![cover art for (Explicitly Sick) How to Confront Ableism, Racism, and Sexism: Tiara Simmons-Mercius - Part 2:](https://res.cloudinary.com/pippa/image/fetch/h_750,w_750,f_auto/https://assets.pippa.io/shows/5b6ba27ab39d904e57d877bb/1578424374619-5838fb6d1f3ead745bfd2ddc2ee8ca35.jpeg)
Invisible Not Broken - Chronic Illness Podcast Network
(Explicitly Sick) How to Confront Ableism, Racism, and Sexism: Tiara Simmons-Mercius - Part 2:
Subjects Covered
For Part 2
Tattoos and Disability
Activism and Disability
New Mother World
Life Hacks for Disabled Moms
Disability Temper Tantrums
Labor and Delivery Disability and Race
Pregnancy and Disability
Infant and Maternal Mortality Rates for Black Women
Medical Racism and Ableism in the Medical System
Disability and Custody
Birth Story
Disabled Merch
When you get to be the test for a surgeon’s sewing skills
Disabled When Your Baby is in NICU Hospitals Need to Prepare for Disabled Mothers
Doctors Appointments and Wheelchairs
Nightlife and the Danger to Dignity When Clubs and Bars Are Not Accessible
The ADA is not what you think it is
MEET WITH YOUR REPRESENTATIVES!!!!!
Ignorance is a Curable Condition
The Straw Ban Please Talk To Disabled People Before Making am Opinion
Please get me a Super Crip Shirt
I Was Mixed up and Wrong About Kenya. I am sorry please take a look at Kenya’s Disability Legislation
Carrying Us In Our Wheelchairs Does NOT Count As Access
If It Is One the Ground It is On Our Hands. Wheel Life
Traffic and Driving in the City is a Good Prep for
Website/Blog, Twitter, & Instagram Handle
www.fourwheelworkout.com, @4wheelworkout
Name *
Tiara Simmons-Mercius
Disorder Info
What is your disorder? *
I have a disability. Not a disorder. I am a double below-knee amputee. Three fingers on my right hand are partially amputated. I have invisible disabilities as well: Neuropathy and paraplegia
At what age did your disorder become a daily issue? *
1
Who were you before your illness became debilitating? *
I've always been disabled so, I guess the person I am now is who I've always been, or was growing into.
What would you do if you were not dealing with your invisible illness? *
Much of the same things as I do now: Advocacy, activism. Working or trying to work. My invisible disabilities only affect me slightly more than my visible.
What would you like people to know about your daily life? *
It is not a life to be pitied. Yes, I have barriers, but my disabilities are not the barriers, even though they can be draining. Lack of access is; ableism is.
What would make living and moving in the world easier for you? *
More accessibility. Less pity. More opportunities for involvement.
Do you have any life hacks? *
Not really. I use anything I can find to help me reach items. I use my wheelchair footplates to help me transport items.
What kind of support do you get from family or friends? *
My husband is a huge help. He gives me a lot of support both physical and emotional.
Have you ever had someone not believe you have an invisible illness because of your appearance and if so are there any examples that stand out? *
Sometimes. But I think what makes it more believable is the fact that I have visible disabilities, so it's not a stretch that I'd have more (to those people)
How has your chronic illness affected your relationships? *
I'm not as social as I used to be. So people do not call me or invite me out as much.
Is there anything you are afraid to tell people in your life? *
I'm generally pretty open. It's not so much WHAT I'd tell them, it's the HOW. I'm also straightforward and tend to just say what needs to be said.
Does the fact that your disease is invisible change how healthcare professionals treat you? *
My HCPs put in my records that I'm a chronic pain patient, but they are just paying me lip service I think.
What is your best coping mechanism? *
Sleep. Sleep and music.
What are you the most concerned about and the most hopeful for in the future? *
Concerned about being a disabled parent. But also, that's what makes me hopeful. My future career as a lawyer also fits into both categories.
Is there anything you *don't* want to talk about? Is there a subject we should avoid during the interview? *
Not sure. I will politely let you know during the interview.
Is there anything you want to make sure we talk about during the interview? Like an organization you want to promote or something specific that you deal with.
I want to be able to speak about medical racism. Being a Black disabled woman navigating healthcare and society.
What is the hardest and/or best lesson your condition has taught you?
Best lesson: I don't have to do everything.
What is the best purchase under $100 that helped your life
Crockpot. Go figure.
Recommendations
CoSleeper
More episodes
View all episodes
Using Self-Portraits to Represent Chronic Pain
01:00:29|Monica Michelle is joined by artist Kyrianna Bolles.Kyrianna lives with chronic pain.In this episode, Monica and Kyrianna discuss: Kyrianna’s struggle to be accommodated for her pain throughout school yearsHow Kyrianna uses her portraits to help represent other’s chronic conditionsThe communities Kyrianna has built, from a college support group to an artist collectiveKyrianna’s favorite tools for art and chronic painTIMESTAMPS00:00 Intro to Kyrianna 10:45 Kyrianna’s self portraits 24:42 Kyrianna’s Support group 33:40 Animus45:57 Kyriannas favorite support tools The full transcript and all links mentioned can be found on the episode page on invisiblenotbroken.comDory’s Corner: New Podcast intro with Host Nick Clemmons
01:00:25|Monica Michelle is interviewed by consultant and content creator Nick Clemmons. Nick recently started the blog Dory’s Corner with Invisible Not Broken. A companion podcast hosted by Nick will be released soon.Nick lives with Sickle Cell Disease. Monica lives with Ehlers-Danlos Syndrome, POTS, MCAS, and Fibromyalgia.In this episode, Nick and Monica discuss:Monica’s diagnostic history and her relationship with her disabilitiesHow Monica learned to advocate for herselfLack of media representation influencing abled people’s perspectives of disabled folksHow Monica’s family functions around disabilityTIMESTAMPS00:42 - Monica’s history and relationship with her disabilities13:06 - How Monica found her voice *Trigger Warning: Mention of SA* 31:40 - Media representation45:09 - Monica’s familyThe full transcript and all links mentioned can be found on the episode page on invisiblenotbroken.comDisability Access in the Education System and How to Support Disabled Folks’ Needs with Nick Clemmons
54:05|Monica Michelle is joined by consultant and podcast host Nick Clemmons.Nick lives with Sickle Cell Disease.In this episode, Monica and Nick discuss:The ways disabled folks are often forgotten in education infrastructureHow Nick navigates societal limitations to achieve his goalsDisability representation in the mediaKnowing how to realistically offer help to disabled folksTIMESTAMPS00:42 - ADA, Title IX, and disability access in schools20:08 - How Nick makes and achieves opportunities 28:40 - Media and disability40:42 - How to respectfully be concerned about someone else’s needsThe full transcript and all links mentioned can be found on the episode page on invisiblenotbroken.comVulnerability, Resiliency, and Advocacy with Tim Reitsma
47:06|Monica Michelle is joined by consultant and podcast host Tim Reitma.Tim lives with Crohn's Disease.In this episode, Monica and Tim discuss: Tim’s resiliency through managing his Crohn’sThe importance of self-advocacy, especially in the workplace Tim’s podcast why he shares stories of those with invisible illness TIMESTAMPS00:47 - Tim's diagnosis 06:31 - How and why Tim applies self advocacy15:41 - Why Tim started his podcast22:42 - Invisible condition etiquette31:00 - What HR can do better for employees with invisible illness39:31 - Tools Tim uses to care for his Crohn’s outside the homeThe full transcript and all links mentioned can be found on the episode page on invisiblenotbroken.comTech and Disability: What VR Offers the Disabled Community with Sunny Ammerman
01:10:27|Monica Michelle is joined by artist and disability advocate Sunny AmmermanSunny lives with Septo-optic dysplasia, panhypopituitarism, Optic Nerve Hypoplasia, and is missing a membrane in the brain called the "septum pellucidum".In this episode, Monica and Sunny discuss: Sunny’s complex disorders and how she copes with themEverything VR provides from accessible gaming, social platforms and the potential for better online education.Various VR/AR games and their gameplay Sunny’s VR support groupTIMESTAMPS00:45 - What VR/AR offers for chronically ill and disabled folks11:57 - Sunny’s conditions and how she copes with them17:55 - Features that make VR games accessible or inaccessible as well as different games and their play experiences37:13 - The social aspects of virtual gaming51:32 - What opportunities VR has for the future1:04:49 - Sunny’s VR support group The full transcript and all links mentioned can be found on the episode page on invisiblenotbroken.comReporting on Chronic Illness and Disability with Journalist Julia Metraux
39:16|Monica Michelle is joined by Journalist Julia Metraux.Julia lives with vasculitis, mild to moderate hearing loss, and has experienced long COVID.In this episode, Monica and Julia discuss: Julia's diagnosis with vasculitis and how it influences her journalistic lensHow community impacts the mental health of those with chronic illnessHow Julia and Monica find positives and negatives in the internet spaces for chronically ill and disabled folksThe politics of how government, businesses, and celebrities influence the chronic illness community TIMESTAMPS00:32 - Julia's diagnostic journey07:02 - Julia’s work reporting on the online community of chronic illness 16:32 - The effect of Internet communities on chronically ill and disabled folks26:46 - How Julia’s illness impacts her work, both in what she writes about and how she manages her lifestyleThe full transcript and all links mentioned can be found on the episode page on invisiblenotbroken.comAuthor of “Pain: The Ultimate Mentor,” Physiotherapist Kevin Hunt
31:29|Monica Michelle is joined by author & physiotherapist Kevin Hunt.Kevin lives with chronic pain.In this episode, Monica and Kevin discuss: Kevin’s philosophy of pain management as a physiotherapist who experiences chronic pain. The Hexagon Model, a life-management tool for focusing on what’s important to you.Kevin’s idea behind his new book.Using pain as a guide.TIMESTAMPS00:34 - Kevin’s work as a physiotherapist specializing in the experience of pain 06:44 - The Hexagon Model for managing your life’s needs14:00 - Putting aside the idea of a “quick fix”19:45 - Kevin’s personal experience with pain and how he uses it with patients28:44 - Kevin’s book, “Pain: The Ultimate Mentor”The full transcript and all links mentioned can be found on the episode page on invisiblenotbroken.comAuthor of “Through the Pain: The Silent Suffering & Triumph of a Personal Trainer”: John K. Frazier
28:35|Monica Michelle is joined by author & personal trainer John K. Frazier.John lives with ankylosing spondylitis.In this episode, Monica and John discuss: John’s work as a physical trainer and authorChronic pain comparisonsPersonal triumphTIMESTAMPS00:50 - John’s business & diagnosis07:19 - Chronic pain olympics09:31 - Talking about & hiding a diagnosis15:09 - Personal triumph18:24 - Staying in the present23:29 - The superman complexThe full transcript and all links mentioned can be found on the episode page on invisiblenotbroken.comThe Creative Process, Self Worth, and Dating with Disability: Laura Mustard
31:08|Monica Michelle is joined by musician Laura Mustard.Laura lives with VATER syndrome.In this episode, Monica and Laura discuss: Laura’s inspiration for her upcoming musical EP.How Laura’s illness impacted her recent relationship & self-image.Laura’s creative process, new music, and social media pressure.TIMESTAMPS00:30 - Laura’s new EP / Monica’s recent COVID experience05:32 - Relationships with chronic illness11:20 - Image and self acceptance with disability15:32 - Laura’s creative process and current projects20:05 - Pursuing creativity despite social media attentionThe full transcript and all links mentioned can be found on the episode page on invisiblenotbroken.com