Invisible Not Broken - Chronic Illness Podcast Network

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

HR620 Law

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.

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