Explicitly Sick

Mentions

ALinker

CMT Awareness Month

Website/Blog, Twitter, & Instagram Handle

Facebook, @gayleweenie on Instagram

Name *

Lisa Weiner

Disorder Info

What is your disorder? *

Charcot-Marie-Tooth disease

How To Vote By Mail In California: 2020 General Election: August 25, 2020 (full article detailed below).

https://patch.com/california/across-ca/how-vote-mail-california-2020-general-election

“Once your mailed-in ballot is completed, it can be inserted into the provided envelope and sent to your local county elections office.

You can also return your ballot by:

Bringing it in-person to any nearby polling place or elections office before 8 p.m. on Election Day, November 3.

Dropping it into one of your county's ballot drop boxes before 8 p.m. on Election Day.

Authorizing someone else to return the ballot on your behalf. (If you do this, you must fill out the authorization form on the back of the ballot envelope you receive.)

If you are not yet registered to vote, you can register online here, up until October 19. California also offers same-day registration, which can be done on Election Day at your local polling place.

If you need to change your address to vote by mail, you can:

Write to your local county elections official

Fill out this online application, print, sign, and date it, and then mail it to your county elections office. (Also available in Spanish, Chinese, Hindi, Japanese, Khmer, Korean, Tagalog, Thai, and Vietnamese)

Or, fill out the application printed on the voter information guide, which is mailed to every voter by their county elections office before the election

Visit the California Secretary of State's website for more information about how to vote in this fall's General Election.”

CA 2020 Election: Voting In Person; What To Know: September 30, 2020 (click link below for full article)

https://patch.com/california/across-ca/ca-2020-election-voting-person-what-know

Main points:

*Governor Gavin Newsom made an executive order to mail absentee ballots to every registered voter in California.

Though everyone will get a ballot in the mail, some will inevitably need to visit a polling place for many reasons — for lost or damaged ballots or for language or disability assistance. Some will need to register last minute on Election Day, which state law allows at polling sites.

In person voting: begins as early as October 31 and ends on election day, Tuesday, November 3, at 8 PM. There will be fewer polling places per county than usual, so as to limit spiraling lines/congestion and mitigate spread of COVID-19. Also, due to pandemic, many usual polling locations i.e., retirement homes, community centers and churches are closed.

Find your polling place by using this form on the California Secretary of State's website. California Secretary of State, Elections Division, 1500 11th St., 5th Floor, Sacramento, CA 95814 Phone: (916) 657-2166, (800) 345-VOTE (8683), (800) 833-8683 (TTY/TDD) Website: www.sos.ca.gov/elections/

Register to vote or check if your registration status is active here.

If voting in person, you should bring your mailed ballot with you to your nearest polling place. Since all CA voters were mailed ballots this year, this is proof that you didn't already mail your ballot and vote twice.

However, if you forget to bring your ballot to polling place, or it became lost in the mail, you may need to vote provisionally. This means that your vote may be subject to a screening. Officials may want to verify your registration status or confirm that it wasn't already mailed. With these extra steps, a vote may not be counted on Nov. 3, but it will eventually.

Also, voters should arrive with the proper COVID-19 protective gear. Poll workers are instructed to keep their distance and wear masks. They will provide face coverings to voters who need them.

Voting with a Disability: 

Federal law requires that people with disabilities have access to vote on Election Day.

Federal law requires at least one accessible voting system in every in-person voting center. However, it’s best to connect with your local election officials to confirm an accessible polling location in your area.

If your assigned polling location is not accessible, you have the right to be reassigned to an accessible polling place or to be provided an alternative method of voting.

If you encounter a barrier when you arrive, talk with a poll worker or election judge present to make accommodations.

A person has the right to ask to vote curbside, in a car/vehicle if the polling place is not accessible.

A person has the right to have a friend, family member, or polling staff help them to vote. The Voting Rights Act of 1964 states that any voter requiring assistance to vote because of a disability will have the ability to bring a person of their choice to assist them in casting their ballot. Though polling staff should be trained in accessible voting, that may not be reality at your polling location.

A person also has the right to refuse help with voting if they don’t need it.

Other voting resources: 

For general and accurate voting information: https://vote.gov/ and https://www.healthyvoting.org/

You can track your ballot on California’s ballot tracker: https://california.ballottrax.net/voter/

American Association of People with Disabilities; https://www.aapd.com/wp-content/uploads/2020/10/State-Voting-Guide-California.pdf (this is a thorough guide of voting resources including ones detailed below).

To request remote accessible vote by mail, need to request by October 27. https://www.sos.ca.gov/elections/voting-resources/remote-accessible-vote-mail

National Association of the Deaf (NAD); American sign language (ASL) voting hotline: 301-818-VOTE or 301-818-8683; https://www.nad.org/asl-voter-hotline/

National Federation of the Blind (NFB): they have voting information you can download in Word, braille, Word in Spanish, braille in Spanish, and a specific guide for young people, also in braille. They also have voter guide videos in English and Spanish. https://www.nfb.org/programs-services/center-excellence-nonvisual-access/national-center-nonvisual-election-3.

Self advocates becoming empowered for voting and guardianship. Website includes informative videos on how to deal with potential voting problems at polling location. https://www.sabeusa.org/govoter/voting-info/voting-and-guardianship/.

Autistic Self Advocacy Network (ASAN): A Self-Advocate’s Guide to Voting in the U.S. https://autisticadvocacy.org/policy/toolkits/voting/

California easy voter guide; https://easyvoterguide.org/

Voter’s Edge California: https://votersedge.org/ca

Disability Vote California: https://disabilityvoteca.org/

Disability Rights California: for voting publications https://www.disabilityrightsca.org/resources/voting. Disability Rights California: 1831 K Street, Sacramento, CA 95811; Phone: 916-504-5800, 800-719-5798 (TTY), 800-776-5746 (Toll Free); [email protected]; www.disabilityrightsca.org/

Election protection hotline: 866-OUR-VOTE (866-687-8683); https://866ourvote.org/

The Muscular Dystrophy Association (MDA), recently sat down with Pennsylvania Senator Bob Casey, about accessible voting and what he’s doing in Congress to make voting more accessible for individuals living with disabilities. Click here to watch video: https://youtu.be/9e4w6bc5lkg . And, link for MDA‘s Advocacy Institute on accessible voting: https://strongly.mda.org/know-your-voting-rights-on-election-day-2020/.

National conference on state legislators: voting info by state and how to restore voting right after a felony conviction. In 2016, California passed legislation allowing those in county jails to vote while incarcerated, but not those in state or federal prison. https://www.ncsl.org/research/elections-and-campaigns/felon-voting-rights.aspx.

Attachments area

Preview YouTube video MDA Advocacy Institute Session 4: Accessible VotingMDA Advocacy Institute Session 4: Accessible Voting

At what age did your disorder become a daily issue? *

29

Who were you before your illness became debilitating? *

I was a happy, healthy, young adult, recently moved in with my then-boyfriend, working full-time at a healthcare consulting company. Also, I had recently applied to masters public health program.(MPH) programs though was rejected from all 3 programs, where I applied. Though disappointed, I was still optimistic, and certain I’d find another way for career advancement or development.

What would you do if you were not dealing with your disorder and/or disability? *

Writing more, dancing, graduate school, traveling, volunteering in person, socializing a lot more with friends and family, having children (though can’t anymore at age 49)... I did want to be a mother/have children.

What would you like people to know about your daily life? *

This is probably TMI, too much information but here’s my answer:-): My daily life varies tremendously, depending on previous days activities, sleep, and the priorities to accomplish for the day. I frequently feel like a young person in an older person’s body. Therefore, everyday tasks/activities often take longer for me, and utilize spoons, like taking a bath, getting dressed, putting shoes and braces on, etc. I often arrange MD or other health-related appointments, and sometimes transportation.

I manage a multitude of healthcare paperwork, and receipts for medical deductions. Also, I usually stretch and do some movement each day. And like most people, I check and answer email, as well as read, research, shop and/or connect online.

Though admittedly, I tend to find social media overwhelming and fatiguing, So, social media is usually my last priority. I’m definitely open to suggestions for mitigating social media fatigue. Typically, I prefer to text, email, call, FaceTime or zoom with close friends and family. Additionally, a couple of days a week I play mah-jongg with friends, and a couple of days a week I go to the local Peninsula Jewish Community Center (PJCC) for Pilates exercise or community events/activities, pre-COVID-19.

I love to write, and free-write mostly for myself. I especially like writing personal essays and articles. I’ve written an article on caring for hands with CMT published on cmtausa.org, and CMTA’s spring 2020 magazine. Despite hand challenges, I enjoy various arts and crafts. Before COVID-19, attended a few free adult arts and crafts classes/workshops. I’ve participated in a variety of volunteer projects over the years including, tutoring primary school-age kids, reading stories to preschoolers, participating in various consumer/market research studies and usability focus groups. I’ve organized and participated in many CMTA fundraising efforts, and in 2019, was a top individual fundraiser of all the annual CMTA walks across the country.

Our annual SF/Bay Area September walk for CMT, usually located in Palo Alto, California, won’t be taking place this year due to COVID-19. However, we will still fundraise online, and friends and family do their own walks. Last year, with the recommendation of San Mateo‘s Center For Independence and Disabled, Assistive Technology Coordinator, I worked with a local private high school for their Project Invent program. Along with other high schools across the country, each student group developed their technology device innovation for someone in the disabled community. Students interviewed and videotaped me for a couple of hours, as I told my story living with Charcot-Marie-Tooth disease. Then, I corresponded with their teacher via emails, as well as a couple Zoom calls with teacher and students.

They developed a technology called Ruby, to automatically tie shoelaces through a click of the heel and/or handheld device/remote control. Because of COVID-19, students didn’t have an opportunity to work with me after the prototype complete and test it. But, I saw a 3-D model they developed on the computer, during the virtual Project Invent Demo Day presentation. There were nine student teams. They had five judges from big tech companies around the country (i.e. Amazon) as well as the founder of Project Invent. Team Ruby were one of three runner up teams, winning a $500 prize to further test their product and try and bring to the marketplace. It was amazing seeing these brilliant and innovative kids! It was truly an honor to participate. Eventually, assuming we’re able to be together in groups again, goal is to meet with high school student team, to test the prototype. The following link explains and shows a 3-D model of project: https://www.csus.org/news-detail?pk=1102892

What would make living and moving in the world easier for you? *

Packaging not so difficult to open on everyday items!

I have heard you say on this podcast, that Uber and Lyft should offer reduced prices for disabled customers.

I would broaden that to other company services, as well as movie theaters, live theater productions, and concerts, and sporting events. If had more energy,

I’d like to aggressively advocate for increased opportunities for low-income housing, especially for young adults to middle-age, with physical disabilities, and include such offerings as rehabilitation pool, group activities, etc.

One other thing is new innovations/technology for mobility...ways to be more mobile and active. Have you heard of the Alinker, https://www.thealinker.com/? It’s not right for everyone, but a fabulous mobility aid developed by an engineer in the Netherlands.. It’s somewhat pricey, and not covered by Medicare or most insurance plans. However, it’s extremely well-made, and I’d love to have one😄.

Do you have any life hacks? *

OK, my favorite hack comes from a former boyfriend. One night when eating out at a favorite local, casual Mexican restaurant, I had difficulty eating with the plastic utensils. Because of my hand weakness/dexterity issues, eating or using utensils without a thick end to hold onto, is extremely challenging. However, the restaurant had a salsa bar, containing aluminum foil to wrap up leftovers. My then-boyfriend took my fork over to the salsa bar and proceeded to wrap aluminum foil around the end, increasing its thickness. He was truly one of a kind, gifted in both cooking and adapting everyday items. Though we continued to have a close friendship, six months after we stopped dating, he was diagnosed with an extremely rare aggressive cancer, primary malignant hepatic hemangioendothelioma. He saw the best UCSF oncologist and underwent all chemotherapy options. He even worked his full-time job till just a couple weeks prior to his passing at age 47.

Not sure if the following qualify as life hacks, however, these items/adaptive aids have been truly life-changing: foam roller, massage balls for releasing tight muscles; Good Grips utensils in the kitchen, rocker knife, easy adaptive scissors (often advertised for young kids), Lock Lace shoelaces, fingerless gloves, and Caneseat (cane that has a pull out seat).

What kind of support do you get from family or friends? *

Huge amount of support from my family! I am extremely fortunate to have two amazing parents, who try to learn and educated themselves about my condition. My mom often attends my quarterly CMTA support group, and they both always contribute to my fundraising campaign for CMTA’s annual walk. About five years ago, they both helped with my own game day CMTA fundraiser- mostly mah-jongg, but one of Scrabble as well. My mom home-cooked and baked all the food! And my dad came to help set up and serve along with bringing fabulous SF lox and bagels.

Have you ever had someone, or a medical professional, not believe you have an invisible illness because of your appearance and if so are there any examples that stand out? *

When first experienced profound fatigue symptoms post strep throat, I saw several different physicians, including an infectious disease MD and endocrinologist. At that time, I also begin seeing a new primary care physician, recommended by family member’s doctor. I definitely felt he discounted chronic fatigue syndrome as a “real condition.“ His initial suggestion was that I see a psychiatrist. I remember that first psychiatry visit very well. At the end of the session, the doctor revealed he didn’t think anything was psychologically wrong with me... something along those lines. He suggested an anti-depressant to help with mood and sleep. It was extremely frustrating since he never acknowledged that I already had Charcot-Marie-Tooth disease, with fatigue being a common symptom. And, he also never thought to ask about sleep issues or have me take a sleep study test. As it turns out, I was later diagnosed with obstructive sleep apnea (OSA). I now wear an oral appliance for OSA, usually along with CPAP machine. The OSA treatment is not a panacea, but it does help, especially with mental acuity ...not having as much brain fog.

How has your chronic illness affected your relationships? *

It’s affected my relationship tremendously! Like many with disabilities or invisible illness, some friends drop off, but others surprise you. Most of my family are big planners, and very punctual. So, it has been an adjustment and lots of additional communication to understand one another’ needs.

Is there anything you are afraid to tell people in your life? *

Sometimes I feel sad that I can’t contribute more. Also, I am afraid of rejection or feeling accepted when dating or sometimes with a family member or new friend.

What is your best coping mechanism? *

Exercise, stretching, hot bath, massage, acupuncture, family and friends – I guess that’s more than one😄.. Also, watching great movies or TV...any entertaining, enjoyable, or relaxing activity.

What are you the most concerned about and the most hopeful for in the future? *

I am most concerned about being alone and lonely in my elder years. My only sibling lives in another state, Colorado, but I am very fortunate to have family/cousins and friends nearby. I am most hopeful for all the promising medical research into my disease, along with medical advancement generally. Also, there’s always new surgical solutions being developed and new materials and designs developed for orthotic devices/leg braces.

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.

Charcot-Marie Tooth Association (CMTA) is the primary resource in US, https://www.cmtausa.org/ . I also recommend Muscular Dystrophy Association (MDA), https://www.mda.org/ , and Hereditary Neuropathy Foundation HNF, https://www.hnf-cure.org/ for resources and information. Bestfoot4wardblog.com is a wonderful blog by my friend and CMTA board member, Elizabeth Ouellette. Her young adult son, Yohan, has CMT type 1A, also by spontaneous mutation. I started a free WordPress blog, but haven’t written anything yet – just getting started :-). You can search Charcot-Marie-Tooth books on Amazon. There are a few great books written by those living with CMT, including a couple books for kids. There’s also now a CMT camp, free to kids, sponsored by a Pennsylvania grant. Family does need to provide/pay for their child’s travel arrangements.

What makes you energized or enthusiastic? What drains you?

Energized: Socializing with close friends and family, exercise, my nephews, caffeine, helping people find resources...or making an introduction or referral to someone. Writing, editing or collaborating with others on a creative project. Drains: people with negative or needy energy, lots of socializing at big events, multiple activities a day or overdoing it in some way.

Any favorite books or shows?

Marvelous Mrs. Maisel, Hunters, Homeland, Veep, Big Little Lies, Dancing with the Stars, Parenthood, Modern Family, Books: Inheritance, Dani Shapiro; Nightingale, Kristin Hannah; The weight of ink, Rachel Kadish; The muralist and The collectors apprentice, B. A. Shapiro; The radium girls, Kate Moore; Where the crawdads sing, Delia Owens. Authors:, Ann Patchett, Jodi Picoult, Anne Lamott, Sue Monk Kidd, Lisa See

What is the hardest and/or best lesson your condition has taught you?

How drastically a chronic condition can affect your daily life and relationships! Finding creative modifications with every day items, tasks and even ways of meeting and socializing, is also extremely humbling. Best lesson is all the people that rally around to support you in various ways. And, how some people and organizations go above and beyond, sincerely doing what they can to help.

What is the best purchase under $100 that helped your life

Probably my big physio ball. I sit on it all the time to improve posture and do exercises like balancing with one leg off the ground. Also, hip circle/band you put around your hips or knees and you can do outer hip, outer thighs, and glut exercises either sitting, laying down doing bridges, or squats and lunges.

May We Add You To Our Newsletter? *

YES!

Any questions you think we should add to this list?

Maybe something like, what’s one action step or idea you have to collaborate with others on your disability/chronic condition, or improving disability rights...?

Submitted 7/29/20, 11:52 AM

Death With Dignity State Laws

Advance Care Planning for Alzheimer’s Disease or Dementia

Finalexit.org

John Abraham’s when we decide how someone else should die we are playing god.

Compassion and Choices

Death Cafe

Covid end of life and choices

Website/Blog, Twitter, & Instagram Handle

InsomniaDoodles.com, @InsomniaDoodles (on Twitter), @theinsomniadoodles (on instagram)

Name *

Sunshine "Sunny" Ammerman

Disorder Info

What is your disorder? *

Septo-Optic Dysplasia, which is a larger rare diagnosis that encompasses two other rare diagnoses, Panhypopituitarism and Optic Nerve Hypoplasia. I am also missing a membrane in my brain called the "septum pellucidum".

At what age did your disorder become a daily issue? *

0

Who were you before your illness became debilitating? *

Just an outdoorsy kid with a big imagination! My symptoms started to become gradually more debilitating in high school, so I didn't really have the chance to do much more than dream about what I thought I wanted my future to be like. My symptoms became unavoidably debilitating when I was in my early 20s.

What would you do if you were not dealing with your disorder and/or disability? *

I would be getting myself into all kinds of (good) trouble either as a journalist or legislator, more than likely. I would have loved to travel, meet as many different people as possible, and make a difference in some way. I think I have an activist's spirit. Having a rare disease and invisible disability just gave me a clear path to put that enthusiasm to work!

What would you like people to know about your daily life? *

I have no idea what kind of day I'm going to have until I wake up that day and assess my symptoms and energy levels. I'm a D&D nerd, so I like to compare it to waking up and rolling a D20. Sometimes it's a natural 1, other times it's just fine, but it's hard to make plans ahead of time when you never know what any given day has in store for your body's ability to function.

What would make living and moving in the world easier for you? *

Breaking the stigma of invisible illnesses and disabilities throughout our society would help tremendously, but practically speaking, as a partially blind person who can not drive due to my low vision, access to reliable, affordable transportation is KEY to my independence. I wanted to take an undergraduate digital art class at Purdue last year, and I lost that opportunity simply because I couldn't find transportation to go to that class, despite having swallowed my pride and asking everyone I could think to ask for help. That was disheartening, but inspired me to put more pressure on local leadership, which led to our previous mayor lovingly calling me "trouble" as a nickname! haha

Do you have any life hacks? *

Yes, indeed! UTILIZE TECHNOLOGY! Robots are our friends! I have smart speakers in my house that I have scheduled to remind me when to take my meds throughout the day as well as reminding me to take time to exercise or meditate, get ready for bed, and simply to eat lunch. I'm almost 30 years old, and until I started doing this, I had a bad habit of forgetting to take my meds (even though I've been taking them multiple times a day every day since I was 13. oops). Other than my speakers, I use Trello to help keep my tasks in order since its not uncommon for me to experience brain fog and totally forget important things on my mental to-do list. I also rely on my smart watch to help track health data relevant to my care plan.

What kind of support do you get from family or friends? *

I have been so, so lucky to have a partner who is understanding, patient, and more kind to me than I am to myself sometimes. He has seen me at my absolute lowest points and helped to carry me through it. He is incredible. I'm also super lucky to have friends and family members who understand and are willing to learn about and adapt to my needs. Of course, I've also encountered some family members and acquaintances who have been less than kind to me, and I've experienced some judgement and skepticism that stung, but I've learned over time that you can't win them all, so it's really their loss that they don't get to have me in their life. I don't put up with people like that if I can help it. "ya-yeet" as the kids say these days

Have you ever had someone, or a medical professional, not believe you have an invisible illness because of your appearance and if so are there any examples that stand out? *

OH BOY DO I. I'll share one experience in particular that is still vividly clear in my memory because I was so livid when it happened. I used to work at Kroger, and I actually loved my job there. I have a great work ethic, and this was before my body put its proverbial foot down and insisted on not working anymore. My bosses loved my gusto, and I'm a people-pleaser so I would often come in on my days off if called and fill in anywhere I was needed. I had been working there for about eight months or so and management hired a new manager, who was unaware of my health issues. When I was hired on initially, I warned the manager who had interviewed me about my potential health problems. I had told him before the interview was even over that I may eventually just not be able to continue working, because that had happened to me in the past at another job. He decided to give me a chance, and so I gave this job everything I had, I was so grateful. Anyway, this new manager came in with no idea about the warning I had given my other boss, and she saw my work ethic and was impressed. She offered me a promotion! I was asked to manage my very own department within the store. When she pitched this idea to me, I was ECSTATIC. I was just so overwhelmed with joy that someone trusted me enough to manage an entire department on my own, so I told her yes without really thinking too much about it. Later on when I had more of a chance to think, I had to acknowledge that lately my symptoms had been getting worse. I had already had an adrenal crisis that put me in the hospital, and a subsequent illness that put me out of commission for a couple of weeks. Since then, my daily symptoms had worsened and I never felt fully recovered. Recognizing the signs that had forced me to leave my previous job, I just didn’t think it would be responsible for me to take on a management role by myself. If I had to miss work for any amount of time, my department would suffer, and that would in turn reflect negatively on the entire store. Despite my eagerness to please, I decided to go back into her office the next day (on my day off, mind you) and talk to her about it. I asked if the other manager had told her about my health condition. She said he had not, so I went on to explain what my diagnosis is, and how it affects my body’s ability to function. I poured my heart out to her, and told her very personal information that made me feel so vulnerable. Admitting you have limits SUCKS, but I needed her to understand. After I explained it the best way I could, I went on to say that as much as I felt honored that she wanted me to take on this promotion, I thought the store should pick an employee that will be better able to keep up with a management role. She then looked me right in the eyes and said “You know what I think? I think you don’t WANT to do it.” I remember standing there in stunned silence for a few seconds. I can still feel the ways my ears and cheeks filled with heat, my hands started to tremble. I wanted to grab her by her skinny ableist neck and shake vigorously, but somehow I managed to keep calm. I am proud of what I said next; “I understand how having an employee who isn’t doing what you want them to do might be frustrating for you, but imagine what it’s like having a body that doesn’t do what you want it to do.” I don’t think she really grasped how serious she screwed up, because she had the audacity to ask me again to take the management role. I told her no, and left. I continued to work there for a few months more before my health deteriorated too much to continue, and I faced more discrimination from her, which I can discuss on the show. My co-workers were in my corner, and when they saw the way she was treating me, they stepped in, which was amazing of them. I tear up still thinking back on that.

How has your chronic illness affected your relationships? *

It caused some strife between my father and I. I still have some painful memories of him blatantly telling me he thought I just wasn't trying hard enough even though I was facing severely debilitating symptoms. We didn't talk for a brief time after that, but he came around eventually and now understands the reality of my situation. Other than that, I have actually been really lucky to have friends and family who are really understanding and still invite me to things even though they understand I might not always be able to come, and they never let me feel guilty for cancelling plans.

Is there anything you are afraid to tell people in your life? *

Honestly? No, I'm an open book. I used to be shy about sharing the reality of my situation, but when I came to the realization that hiding the truth fuels the stigma faced by the invisible illness community, I couldn't let myself contribute to that anymore. Now, I'm unapologetically open about what I go through. I do want to point out that despite being open, I am careful not to come across as negative or a "complainer". I think it's absolutely possible to share the way our conditions affect us without wallowing in it. Not saying we should dive into toxic positivity and act like it doesn't suck, because it absolutely does sometimes, I just like to make sure people understand I don't want pity, I want understanding.

What is your best coping mechanism? *

Do naps count? I do enjoy a good old-fashioned nap sometimes. Other than that, I've found that just talking things through with someone who REALLY understands and cares about you is the most healing thing I've ever done for myself.

What are you the most concerned about and the most hopeful for in the future? *

I'm concerned about healthcare access for people like myself who CAN NOT go without constant medical care. I am personally a big proponent of medicare for all, and seeing insurance coverage for many Americans being put in jeopardy by the current administration has me very concerned indeed. What has me hopeful is the overwhelming support for medicare for all by so many young people, who are indeed the future of this country. I love their enthusiasm! They give me hope for the future.

Is there anything you *don't* want to talk about? Is there a subject we should avoid during the interview? Are you ok with having the video released on YouTube under our Invisible Not Broken YouTube channel? *

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 give a shout out to the National Organization for Rare Disorders (NORD) and their Rare Action Network (RAN). I am the Community Engagement Liaison for the Indiana branch of RAN, and it would be awesome if I could share our contact info so people can reach out and learn more! Also, I was JUST informed that NORD is about to start their own official podcast called "NORDpod", and it would be really cool if I could announce that during the interview as well, but I totally understand if you would rather not promote another podcast. :) Other than that, I would love to mention the weekly support group I host for invisible illnesses and disabilities! It's called "positively invisible" and we meet in virtual reality on a platform called "Altspace" every Sunday at 7pm EST. As the title suggests, we approach life with invisible conditions with a more positive outlook, but without giving in to toxic positivity. We just come together to check in, support one another, and set small attainable weekly goals to help keep us motivated. We also have a discord server where we can chat between meetups, and I post links to upcoming events. I also need to give a shoutout to my zebra sister Katrina for introducing me to this podcast last year. I love it. <3

What makes you energized or enthusiastic? What drains you?

I am absolutely energized by the potential to make a difference! I get so excited about opportunities to raise awareness and lift up the voices of my fellow zebra spoonies! I tend to be drained by negative people mostly, but I also have a hard time dealing with the chores and tasks that pile up when I'm experiencing a symptom flare-up. That's absolutely EXHAUSTING.

Any favorite books or shows?

Favorite books? Basically anything written by so cal psychologist / behavioral economist Dan Ariely. Parks and Recreation is easily my all-time favorite show, but I'm currently binging Community.

What is the hardest and/or best lesson your condition has taught you?

The hardest and best lesson I have learned through all of this is that there is no shame in accepting that you have limits, and respecting those limits. Some ignorant people are going to judge you for it, but that reflects poorly on them, not you. You have to be emotionally strong where your physical strength is lacking.

What is the best purchase under $100 that helped your life

My amazon echo dot! Those medication reminders are a game-changer.

Any questions you think we should add to this list?

I think your questions are all great! I feel like all the important stuff was covered. If I had to come up with something else to ask... maybe I would ask what treatments the guest has to do to treat their illness, if there are any. I'm sure things like that come up naturally in the interview anyway. :) Thanks so much! <3

Elizabeth Gilbert and Tim Ferris

Elizabeth Gilbert TED Talk on Mental Health and Covid

Watchmen and Tulsa Massacre

Lovecraft Country and Jim Crow

A few topics we Tinu and Monica Michelle covered:

Black Hair Care and chronic illness

Monica’s easily matted jewish haircare and dislocations

Rolling blackouts. disability, and Nigeria

Black Live Matter Movement

First Nations

Racism and Socialized Medicine

Race and Hollywood’s Responsibility to Educate on History : Lovecraft Country and The Watchmen

YOU DON’T HAVE TO EARN REST

Disability and parenting

Bedside Manner

Tinu's Info & Links

Tinu Abayomi-Paul-Author, creator
of #EverywhereAccessible Founder of @EveryAcess, Activist, Survivor, cancer Chronic Pain, and black woman.

HASHTAGS TO LOOK FOR PEOPLE TO FOLLOW
#DISABLEDBLACKTALK
#DISABLEDPEOPLEFORBLACKLIVES

RESOURCES

HISTORY OF THE POLICE OFFICERS LINKS

HOW THE U.S. GOT ITS POLICE FORCE

NATIONAL LAW ENFORCEMENT MUSEUM:

SLAVE PATROLS: AN EARLY FORM OF AMERICAN POLICING

PEOPLE TO FOLLOW

@OSOPEPATRISSE @OPALAYO @ALICIAGARZA @KAILEESCALES @THEKINGCENTER @EVERYACCESS @UNITEDWEDREAM

@4WheelWorkOut

WEBSITES

hatewatch.org

BOOKS TO READ:

Born A Crime

Coretta Scott King Book Award Winners: books for children and young adults

31 Children's books to support conversations on race, racism and resistance

Black Feminist Thought by Patricia Hill Collins

Eloquent Rage: A Black Feminist Discovers Her Superpower by Dr. Brittney Cooper

Heavy: An American Memoir by Kiese Laymon

How To Be An Antiracist by Dr. Ibram X. Kendi

I Know Why the Caged Bird Sings by Maya Angelou

Just Mercy by Bryan Stevenson

Me and White Supremacy by Layla F. Saad

Raising Our Hands by Jenna Arnold

Redefining Realness by Janet Mock 

Sister Outsider by Audre Lorde

So You Want to Talk About Race by Ijeoma Oluo

The Bluest Eye by Toni Morrison

The Fire Next Time by James Baldwin

The New Jim Crow: Mass Incarceration in the Age of Colorblindness by Michelle Alexander

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 GYNECOLOGY

ADVICE:

BE CLEAR ASK WITH AN IDEA

HOW TO 'USE AND SHARE
MY PRIVILEGE TO LEVERAGE HELP

'HOW DO WE GIVE PEOPLE THE ROD

COMPANY 'ACTIVISM' -

LATER, TREVOR NOAH NICKOLO DI AN

COLOR BLINDNESS:

THE PROBLEMS

HOW TO AMPLIFY:

INCLUSION RIDERS

WHAT CAN WE DO TO PUSH THE BLACK VOICE-
CREATE A DAY THE 13 FOR SUPPORT OF BLACK ARTISTS, MAKERS, STORYTELLERS. ON THE 13 COMPANIES SHOULD TAKE THAT TIME TO LISTEN TO THEIR WORKERS ABOUT WHAT IS NEEDED N THEIR COMPANIES.


USE YOUR LIBRARY
LIST OF AUTHORS TO START WITH

SUPPORT PROTESTS FROM BED:

CONTACT LOCAL COMMUNITY ORGANIZERS

SUPPLIES, PRESS AGENT, LEGAL HELP , HELP WITH ACCESS. NOTIFY PERSON , FOOD COORDINATE. HASHTAG HELP

HOW CAN TECH WORKERS HELP?
USE A DAY FOR BLACK MONEY TO BLACK ARTISTS



DISABILITY ACCESS AND POLITICAL ACTIVISM



SICK WHILE BLACK. GETTING MEDS.

Website/Blog, Twitter, & Instagram Handle

http://www.sgbigham.com/

Topics Covered

Activism and Disability

A Welcome to All Who Are New To Chronic Illness Due to CoVid Recovery

Using Your Covid Time

Privilege and Chronic Illness

Visibility for Invisible Illness With Art And Writing

Selfcare as an Act of Selflove to Future You

Vaginal Disorders and the Medical Establishment

LGBTQ+ and the Medical Establishment

Attached is a sample chart of assignments for one of the community college classes I teach. (The syllabus has lot of school and course-specific information that won't be useful to the general public, but hopefully the chart gives a good idea of how students show their learning in ways that are not tests.)

*Diane Ravitch's blog: https://dianeravitch.net/

*Washington Post article about low-income students dropping out of college this fall: https://www.washingtonpost.com/business/2020/09/16/college-enrollment-down/

*Newsweek article I mentioned about teachers resigning: https://www.newsweek.com/teachers-resigning-across-us-cite-remote-learning-frustrations-covid-19-concerns-1528553

*On Teaching series by The Atlantic: https://www.theatlantic.com/education/category/teaching-education-history/

*Organizations I mentioned:

https://rethinkingschools.org/

https://www.tolerance.org/

https://diversebooks.org/

https://www.blacklivesmatteratschool.com/

Name *

Sarah Bigham

Disorder Info

What is your disorder? *

So many! Mast cell activation issue, interstitial cystitis, vulvodynia, fibromyalgia - to name a few

At what age did your disorder become a daily issue? *

43

Who were you before your illness became debilitating? *

Such a great question. Who was I? I was a full-time college professor.

What would you do if you were not dealing with your disorder and/or disability? *

This is hard to answer because, on one hand, I wish I could go back to my full-time working life, but on the other hand, my illnesses have opened up other worlds for me with writing and creativity.

What would you like people to know about your daily life? *

It is much harder than people without chronic illness may imagine. I put on a good show and there are many positives in my life, but it is a struggle.

What would make living and moving in the world easier for you? *

More compassion, understanding, and knowledge - from medical providers and the general community.

Do you have any life hacks? *

Naps! Do something creative! Meditate!

What kind of support do you get from family or friends? *

I am lucky - I have a great circle of support. Many do not.

Have you ever had someone, or a medical professional, not believe you have an invisible illness because of your appearance and if so are there any examples that stand out? *

One doctor suggested that the symptoms I had could be explained by psychiatric issues. I highly doubt that a male-identifying person would have been told the same thing. Another care provider seemed only concerned about my weight, as if that was the cause of all my issues. I have to return once a year for ongoing care from that second person, and I dread it every time, but I get the medical equipment I require as a result.

How has your chronic illness affected your relationships? *

Some have been made stronger. Others have lapsed.

Is there anything you are afraid to tell people in your life? *

At the height of my physical pain, it was hard to discuss how I was feeling - physically and emotionally.

What is your best coping mechanism? *

Naps! Reading! Podcasts like this one!

What are you the most concerned about and the most hopeful for in the future? *

I worry that those with chronic illness can be even more isolated during the pandemic. I am hopeful that perhaps chronic illness will get more REAL attention as COVID patients are reporting (unfortunately) long-last side effects.

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'd like to talk about my first book that came out this spring. I consider it a major life accomplishment, even more because I did it while dealing with chronic illness.

What makes you energized or enthusiastic? What drains you?

Energized = connection with others. Draining = dealing with bigots, people who have not used the pandemic to focus on what is essential.

Any favorite books or shows?

My wife and I missed Parks & Recreation when it was on network TV, but are really enjoying it now through Netflix!

What is the hardest and/or best lesson your condition has taught you?

I am stronger than I ever thought possible.

What is the best purchase under $100 that helped your life

You are Not Your Pain - book with an accompanying CD that provides guided meditations for those with chronic pain, written by those with chronic pain - it helped me when nothing else yet did.

Any questions you think we should add to this list?

Who has been the most helpful to you? Least helpful? And why? What is one thing you do every day, without fail. (What is one thing you WISH you did every day, without fail.) Other than sleep, what do you spend the most time doing every day? What is your favorite EASY recipe that you can make without exhausting yourself? What are you reading right now? What is the best medical advice you ever got? The worst? (I will stop with my stream of consciousness now or I could be here all day!) :)

Tinu's Info & Links

Tinu Abayomi-Paul-Author, creator
of #EverywhereAccessible Founder of @EveryAcess, Activist, Survivor, cancer Chronic Pain, and black woman.

HASHTAGS TO LOOK FOR PEOPLE TO FOLLOW
#DISABLEDBLACKTALK
#DISABLEDPEOPLEFORBLACKLIVES

RESOURCES

HISTORY OF THE POLICE OFFICERS LINKS

HOW THE U.S. GOT ITS POLICE FORCE

NATIONAL LAW ENFORCEMENT MUSEUM:

SLAVE PATROLS: AN EARLY FORM OF AMERICAN POLICING

PEOPLE TO FOLLOW

@OSOPEPATRISSE @OPALAYO @ALICIAGARZA @KAILEESCALES @THEKINGCENTER @EVERYACCESS @UNITEDWEDREAM

@4WheelWorkOut

WEBSITES

hatewatch.org

BOOKS TO READ:

Born A Crime

Coretta Scott King Book Award Winners: books for children and young adults

31 Children's books to support conversations on race, racism and resistance

Black Feminist Thought by Patricia Hill Collins

Eloquent Rage: A Black Feminist Discovers Her Superpower by Dr. Brittney Cooper

Heavy: An American Memoir by Kiese Laymon

How To Be An Antiracist by Dr. Ibram X. Kendi

I Know Why the Caged Bird Sings by Maya Angelou

Just Mercy by Bryan Stevenson

Me and White Supremacy by Layla F. Saad

Raising Our Hands by Jenna Arnold

Redefining Realness by Janet Mock 

Sister Outsider by Audre Lorde

So You Want to Talk About Race by Ijeoma Oluo

The Bluest Eye by Toni Morrison

The Fire Next Time by James Baldwin

The New Jim Crow: Mass Incarceration in the Age of Colorblindness by Michelle Alexander

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 GYNECOLOGY

ADVICE:

BE CLEAR ASK WITH AN IDEA

HOW TO 'USE AND SHARE
MY PRIVILEGE TO LEVERAGE HELP

'HOW DO WE GIVE PEOPLE THE ROD

COMPANY 'ACTIVISM' -

LATER, TREVOR NOAH NICKOLO DI AN

COLOR BLINDNESS:

THE PROBLEMS

HOW TO AMPLIFY:

INCLUSION RIDERS

WHAT CAN WE DO TO PUSH THE BLACK VOICE-
CREATE A DAY THE 13 FOR SUPPORT OF BLACK ARTISTS, MAKERS, STORYTELLERS. ON THE 13 COMPANIES SHOULD TAKE THAT TIME TO LISTEN TO THEIR WORKERS ABOUT WHAT IS NEEDED N THEIR COMPANIES.


USE YOUR LIBRARY
LIST OF AUTHORS TO START WITH

SUPPORT PROTESTS FROM BED:

CONTACT LOCAL COMMUNITY ORGANIZERS

SUPPLIES, PRESS AGENT, LEGAL HELP , HELP WITH ACCESS. NOTIFY PERSON , FOOD COORDINATE. HASHTAG HELP

HOW CAN TECH WORKERS HELP?
USE A DAY FOR BLACK MONEY TO BLACK ARTISTS



DISABILITY ACCESS AND POLITICAL ACTIVISM



SICK WHILE BLACK. GETTING MEDS.

Website/Blog, Twitter, & Instagram Handle

doctormarcia.com

Disorder Info

What is your disorder? *

undiagnosed autoimmune, small fiber neuropathy

At what age did your disorder become a daily issue? *

26

Who were you before your illness became debilitating? *

someone that didn't plan out spoons or activities, someone that didn't need constant methods to manage pain & energy.

What would you do if you were not dealing with your disorder and/or disability? *

spend more time freely outside in the sun! photosensitivity in Florida is a bitch.

What would you like people to know about your daily life? *

I'm always sick and in pain despite how I look, how much I lift, how much I work.

What would make living and moving in the world easier for you? *

Doctor's that understood that black women do feel pain and that young people can be sick. I have been undiagnosed for 5 years, and only in the past year have I gotten the care I needed.

Do you have any life hacks? *

Juicing daily for digestion, salt tablets before workouts, weekly acupuncture for more energy, compression socks all the time, sunblock no matter what when I leave the house

What kind of support do you get from family or friends? *

emotional support from a few friends through our Disabled Girls Who Lift community, they can related to my experience

Have you ever had someone, or a medical professional, not believe you have an invisible illness because of your appearance and if so are there any examples that stand out? *

ALWAYS. My last neuro appointment I was told to drink water, do exercise, and learn to get over it.

How has your chronic illness affected your relationships? *

I've grown apart from people who can't understand why I don't attend certain events (especially in COVID times), or related to my disability experience.

Is there anything you are afraid to tell people in your life? *

I am not afraid to disclose my issues, but usually I do not confide in anyone about stress/anxieties/feelings unless they have a disability (visible or not). I've found that people who can't relate can't hold a space for me, I don't want any thoughts & prayers or silly ideas, and I definitely can't stand pity.

What is your best coping mechanism? *

Yoga and lifting!

What are you the most concerned about and the most hopeful for in the future? *

I'm most concerned that my capital D diagnosis will show itself and be a real shit. I'm most hopeful that I can run a successful business from home and start a family within the next two years.

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.

Disabled Girls Who Lift, Just Move Therapy.

What makes you energized or enthusiastic? What drains you?

Mentally anything that requires big brain work on a brain fog day is draining. Filling this form out on a bad day would be work. On a good day, it's fine. So, depends. Physically also depends. On a bad day, I'm on the couch and washing my hair is a mission. On a good day I can workout, take a walk, and cook dinner. the one constant drainer is UV rays, high UV index days are my kryptonite.

Any favorite books or shows?

I love short story books, finished up 'all the names we have for god' recently. Going to start Disability Visibility soon. As far as shows, Ozarks, Parks & Rec, Insecure, Dave, Rick & Morty.

What is the hardest and/or best lesson your condition has taught you?

Slow the fuck down and rest.

What is the best purchase under $100 that helped your life

salt tablets

Any questions you think we should add to this list?

current topics related to anti-racism, black liberation, and COVID