Invisible Not Broken - Chronic Illness Podcast Network

Monica Michelle is joined by disability activist and founder of Everywhere Accessible, Tinu Abayomi-Paul, creator of the popular hashtag #EverywhereAccessible. She is a survivor of Cancer and Chronic Pain, and she is a black woman. *This episode was recorded back in 2020 but is still very topical today. In this episode, Monica and Tinu discuss:Affirmative Action: The Guidelines address what appears to be a conflict between the statutory prohibition against considering race, sex, and national origin in making employment decisions, and the need, often through affirmative action, to eliminate discrimination and to correct the effects of prior discrimination.  First Nation Missing Girls & Laws / Father of GynecologyAdviceBe clear, ask with an idea in mindHow to use and share your privilege to leverage helpHow do we give people the rodCompany ActivismColor BlindnessHow to amplify inclusion ridersWhat we can do to push the Black Voice forward: Create a day on the 13th to support Black artists, makers, and storytellers. On the 13th, companies should take the time to listen to their workers about what is needed within their companies.Use Your Local LibraryGetting Medical & Mental Help while BlackHow Tech Workers can helpA Day for Black money to Black artistsDisability Access and Political ActivismThe full transcript and all links mentioned can be found on the episode page on invisiblenotbroken.com Thank you and enjoy!

Monica Michelle is joined by author of The Lady’s Handbook For Her Mysterious Illness, Sarah Ramey.Sarah Ramey lives with:Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)Complex regional pain syndrome (CRPS) Postural orthostatic tachycardia syndrome (POTS)VulvodyniaMast cell activation syndrome (MCAS) *This episode was recorded back in 2020 but is very much still topical today. In this episode, Sarah Ramey and Monica discuss: being denied painkillersnon-traditional medicine and being forced to embody the female ‘warrior’ archetypethe lack of empathy in the medical worldnavigating specific illnesses within a world of cancer and other leading illnessesbreaking the gender norms, emotional intelligence, and moreTIMESTAMPS01:53 - Sarah’s Story8:17 - Being Denied Painkillers12:00- Forced into Becoming a Wellness “Warrior” with Non-Traditional Medicine17:00 - Feeling Bad for Your Symptoms19:00- Empathy in the Medical World23:13 - “WOMIS” - A Woman with a Mysterious Illness25:31 - Chronic Fatigue Syndrome within a World of Other Issues29:01 - Working From Home33:49 - David Bowie’s Labyrinth and the Parallels 38:40 - Breaking the Gender Normative 48:06 - Final ThoughtsShow notes and the full transcript are located on the episode page. Thank you and enjoy!

Monica Michelle is joined by Dr. Phillips, award-winning psychotherapist and sex therapist. Dr. Phillips offers a safe, empathetic, and warm environment to help clients achieve their goals. Dr. Phillips has experience in treating LGBTQIA populations, depression, sexual challenges, anxiety disorders, trauma, bipolar disorder, substance use disorders, chronic pain, chronic illness, disabilities, and disease. As a dedicated psychotherapist, certified substance abuse counselor, and certified sex and couple’s therapist, Dr. Phillips uses holistic approaches by treating the whole person and not just the symptoms. Clients who are in non-monogamous, swingers, polyamorous, and/or kink relationships are welcomed.This episode was recorded back in 2020 but is very much still topical today. In this episode, Dr. Phillips and Monica discuss: BDSM & coping with paindefining your sexualitygrief and chronic illnessredefining your pleasure zonesself-fulfillment and masturbationthe importance of therapycheck-ins with partners, and more.Timestamps, show notes, and the full transcript are located on the episode page. Thank you and enjoy!

Note: This is my opinion only. I have Ehlers-Danlos, POTS, MCAD, and Fibromyalgia.If you just want a quick answer: Subaru Outback 2023Hi everyone!Welcome to the new series: Disabled Tech ReviewsThe list of “special” and “luxury” items are not so for those of us in chronic pain. I have a budget that for my personal sit-in gets laughed out of existence.The general list used to be:SafetyMPGEnough space for kidsA CD playerAh, the simple life that at the time I thought was untenable. Now with Ehlers dances so advanced I must at the very least have my power wheelchair available I have found sedans are just crossed off the list. They might have the ability with a master’s thesis in Jenga to be able to fit the wheelchair but even if this was possible my cane will not fit as well in case I have a wild flight of optimism that I might be able to walk. Those of you in the know please feel free to roll your eyes or laugh the knowing laugh of those of us who will absolutely have the cause of death written optimism she knew better but thought she could anyway.Ok so even without the wheelchair I might have the body of a middle age woman but my ligaments are more that fossilized posits not you found at the bottom of a bag covered in debris. What I am saying is sedans are low to the ground. Getting in and out of them is my Everest.So sedans and sports cars are out. Minivans while intriguing do not have the space without a massive amount of engineering. Trucks! I LOVE trucks I have wanted one my entire life but the securing in the bed and walking around let’s just say I was too worn out after a quick try to even think of driving. But the electric trucks have frunks! Ah yes, the frunk. I LOVE the lightning. The F150 is the car I dream of as I remember the boys in high school dreamed of having a Lamborghini, and for the cost, it is just as likely I will ever own one. If you can afford it please let me know how amazing it is as a wheelchair user. I promise no dark jealous thoughts will be cast your way only slightly simmering resentment.So an SUV it is. This should not have been limiting but let me give you my list if I am ever to consider driving:SafetySpace for wheelchair, child, canes, GIANT BEASTIE wolf, a small but active hamster disguised as a pug, and groceriesA door that opens wide enough I do not have to pivotBlind spot  AI to help me stop if my leg seizes and lane departure warning. Basically, any safety feature that will save me if my body decides to just not (this is where luxury gets redefined. I have no issue paying extra for sunroofs, seat material, or sound systems. These are in fact LUXURY. Back in the day, Volvo invented a 3-point seat belt. It saves lives. They gave the plans away. For safety. The ability to survive should not be a luxury. This is my hill it has a pre-dug grave and a soap box I am not moving from it.)This started with plug-ins or PHEV there were 3 on the market I wanted none to exist in real life despite the company’s best advertising efforts. Thank you all. We probably won’t be on the cutting edge of any tech but we will do our best to review what we have to make our lives as autonomous as possible from kids care (fluff feather and human) to feeding yourself, to self-care apps, to VR, to the tech we use to run Invisible Not Broken. Please feel free to reach out.Head over to www.invisiblenotbroken.com for more podcasts and blogs about life while disabled.Remember to Be Kind. Be Gentle. And of course, be a Bad Ass.

Interview With Social Security Disability Why It Is So Hard to Access Benefits with Author, Spencer Bishins

Noah: Spina Bifida*Scifi Fantasy & Escape* Reading & Empathy* New House ADA* Airlines & Wheelchairs Noah and I chat about some of my favorite topics from airlines and wheelchairs* Dr Who and other sci fi shows and how they handle disability* Universal Design * School and disabled Access * Reading Fiction and Building EmpathyInvisible Not Broken is a chronic illness and disability podcast Invisible Not Broken with Monica MichellePlease share with friends and your communitySubscribe to our newsletter and the podcastName*Noah MussayPronounshe/himWebsite and handles you want published*@NoahMussay (Twitter), @JulieWestEvents (Twitter I run for work)What is the name of your disorder, When did it present?Spina Bifida. It presented fairly early in my mom's pregnancy, so I was born with it. I also have Arnold Chiari Malformation, hydrocephalus, and scoliosis.What do you want people to know about your daily life?My daily life is relatively unextraordinary. I work. I play video games, I read, and I obsess over Big Brother and Doctor Who. My disability does affect my daily life, and I definitely worry about how I will deal with the struggles it presents when I'm on my own, but I genuinely like my life.What frightens you?I'm frightened by the fact that there are bigger hurdles that I have to face as a disabled person, and although I have a great support system, I sometims fear that I can't rely on myself for that support, and I don't have the benefit of hindsight to know that I can make it work on my own.What is your favorite purchase under $100Mobility aid: My grabber, which I use to grab things that fall or are too high. Less serious answer: Last summer, I purchased an audiobook, which is an in-depth analysis of Season 3 of Big Brother.Anything you want to cover or promote?I definitely think talking about my adoescence would be interesting. I was never an outgoing child, but I had friends in elementary school. Then, in fifth grade, I had a medical situation arise that made it, so I had to be pulled out of school for the rest of the year. When I got returned to school the following year, I felt different and closed off, and it became very hard for me to make friends, and I became a bit resentful that nobody seemed to want to be my friend. It made for a very isolating middle school through high school experience.