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
