Two Mics One Joe Sooch

Meet Jacques. A disability actor who life got altered when a cast mate accidentally fell on him and becoming wheelchair bound. It did not stop his acting career and can see him in a lot of plays and acting roles. Talked about the filing industry where they don’t give yo footage so can be hard to showcase your talents. Finish off with talking about losing friendships as we all go down different paths of life. Just a natural progression of life. 

0:00 Start

4:00 Begin

6:00 My Physical Disability Isn’t Stopping my Goals of Being an Actor

8:00 Now is the Greatest Time to be a Disabled Actor and Authentic

12:00 Why I Have More Footage Non disabled vs Disabled

13:00 Becoming Disabled Gave me a Second Chance

14:00 Being Disabled Sucks; The Worst Thing in my Life

16:00 My Friend Group Definitely Changed After I got Paralyzed

18:00 Losing Friends is a Normal Occurrence of Life  

20:00 Life Gets Busy so You Have Less Friends

Meet Cadence. Dealing with lots of Gi issues and body issues and surgeries. The first full year of her health being stable so feeling really good. Slowly able to eat to gain more weight thus adding more muscle. Less reliant on a neck brace. Still disabled as she will have bad days where she is reliant on her wheelchair. She put a lot of hard work in herself to be active but also lots of luck. Still want to celebrate her achievements with a disclaimer. Finish off talking about the double edge sword of posting about disability and hardships. 

Meet Elena. Having two different disabled kids. One has a congenital upper limb difference. The other has Down syndrome. Start off with her knowing her daughter would have Down syndrome and ask to abort it. Said no and ready for the journey into the disabled world times two. Her daughter having sensory issues; her shoes were taped to her legs unknowing to the mother and was completely heartbroken. She is learning as she goes since Down is such a huge spectrum and different ways of dealing with issues. Finish off with parents exploiting their kids and feeling more important now they have a disabled child.

Meet Lauren. A self advocate Autistic, multiracial, bisexual women. Also an author and blogger. Start off with if more comfortable around books or people. Talked about autistics being happy but they are happy in their own ways but looked down upon by society which makes it a vicious cycle leading to breakdowns and catatonia. Instead of changing them, just embrace them. Talked about adulthood being better than teenage years. Lauren also has Depersonalization/Derealization Disorder and Maladaptive daydreaming due to intense childhood traumas. Now use it to her advantage to write books and keep her bliss. End with her new coping skills to dealing with stress to live a more normal life. Finish off with her two books, “Boy at the Window” and “Gimmicks and Glamour”. Lauren has hundreds of stories that will never be told.

Meet E. A cosplayer dealing with POTS and Functional Neurological Disorder. Start off feeling different when transforming into a different character. The challenges with having to take breaks constantly when putting clothes together, photoshoot, video shoots or working out. Putting ALOT of work to be more self sustainable. Also living a grey are of being non disabled and disable. Our bodies being huge libations on ourselves and the vision we want to portray. Finish off with disability super heroes and the host just totally against them.  

Meet Davy.  Being born girl and raised female, She is now a transgender person who is in a polyamorous relationship. Started off with her journey in finding the LGBTQ community and finding their identity. Mixed with social anxiety; took her a long time till college to find her true self. A lot of hate goes towards trans as a topic, but the tone changes when face to face with one and oh they are human too. Talked about the intricacies of being in a polygamous relationship since I find them super fascinating and can’t work. Davy proves me wrong. Feeling imposter syndrome in gender identity and being disabled. Finish off with the beginning of the polyamorous and even crazier Davy has social anxiety and in a throuple. Fun fact, we met during the episode then sat at the same table during our @runwayofdreams fashion show!

Meet Victoria. The founder of @Unhidden.Uk which makes stylish accessible clothing. We start off with how it feels to be in a new clothing category. We talked about more of the business side with the disability niche. As a small business owner, it is harder to cut costs when sustainable clothing costs more to buy plus the man hours to produce accessible clothing which results in higher prices. Clothes are cheap because of sweat shops; there’s no other way to cut costs. Host introduces a hot take saying disability people say they want x, y and z but won’t support it with their wallets. Talked about the psychology of prices and sales. At the end of the day, it comes to men and value. If you don’t have enough money to keep afloat, the dream will often die. Victoria has a great career ahead being in runway shows and soon will have a workshop to help other designers with accessible clothing. Kudos to all disability business owners for pushing through despite the hardships, Ian and set backs.

Meet Jay. He is a “Mini Producer” who has a rare brittle bone condition known as Osteogenesis Imperfecta Type 3. Started off with why he hid himself while still producing music. Was afraid how the world was going to react to his disability and image. Now we’re here in front of the world and even during NYFW. Next are we attracting an audience due to our skills or our disabilities.  Staying authentic is the best way possible to gather an audience and to keep it. Actually talked about producing and producer tags and beats and am I a producer if I just bang my pots and pans??? The answer will surprise you. Get onto the topic of hearing loss and how it affects the craft. Als dealing with pain, is it better to rest or fight through the pain to create beats. Finish off if creating beats or uploading beats creates more money?

Meet Mindy. The founder of Runway of Dreams to create Adaptable Fashion for the disability community. Start off with if Adaptable Fashion is a legitimate market or just good pr for any company. Talked about Victoria Secret and how they came to them to create the best product for the largest minority group in the world, DISABLED PEOPLE. Doing anything and everything they can to bring more accessible clothing. Host showcased his own set of disability tools so they can even be more independent! This episode was filmed before host’s business launched and Victoria Secret new accessible line. Making things not accessibility is a poor excuse where it would cost a company a minuscule amount to literally help everybody. Even regular people would benefit. Transitioned to if “Accessible” should be its own big category next to women, men, big and tall, plus size etc. Is Disability a good word or bad word? Finished off with what brand she would love to call her phone. The answer may surprise you!

Meet Brooke(part 2).Great conversation where we disagree on everything but still respectful of each other. Start off with is advocacy is useful or pointless. Social media just creates an echo chamber of sorts where the host says you have to go out there and make somewhat physical change. Posting on social media is the bare minimum or really doing nothing to solve a problem. Finish off talking about Crossfit dropping the ball in supporting disabled athletes. Also extremely hard to cater to disabled people since there is a wide variety of disabilities. Never a truly even competition.

Meet Bela. An inclusive coach for the disability and LGBT community. Start off hot with Complaining vs action where you have to do something to make change. Posting a picture with a caption will not do anything. Love talking about taboo topics like bladder problems to help the group of people who feel ashamed. There is too much gatekeeping in every aspect that it hurts more than protect at times. Talked about not getting that many bad comments. Not too sure if it is a low following or white male has to do with it. Get onto the topic of ableist words like handicap due to its bad hidden history dating back to slavery times. Talked about inclusive language where host is massively confused by needing to be inclusive to every subcategory. As a regular person, I will not understand the need for nuances for minority groups. He thinks its a self esteem issue if language is that bothersome. Guest provides a great counter argument. 

Meet Mia. At age 15, her Spinal Arteriovenous Malformation (AVM) ruptured in her spinal cord and left her paralyzed from the waist down. She’s a tv reality star with 3 other women wheelchair users on a show called “Push Girl”. It won a Critic’s Choice Award for “Best Reality Show.” Start off if she is a push girl or independent woman. We talk about her mom who was an alcoholic and not being supportive of her journey after becoming disabled. In the end, it was up to Mia to do what she can control and become a reality tv star and a very good dancer. Talk about shyness and how you can’t be shy with a disability or your world is much smaller. You have to put in the wrk to b great and can’t wait for others because it won’t really help you. Get onto how lame her paralyzation story is because she woke up basically paralyzed. No accident or fall or crazy activity. Just woke up wit a stomach ache then paralyzed from the waist down a few hours later. Walked into a hospital walking and came out in a wheelchair permanently feeling completely fine. Finish off with her dance studio called  “Infinite Flow”. It is America's first professional wheelchair ballroom dance company, which now leads a global social movement for inclusive dance.

0:00 Start

6:45 Helloooo

7:00 a “Push Girl” (Reality TV Show)-Push Limits of What’s Possible

8:00 Having an Alcoholic Mom was Harder Than Dealing With the Disability

11:00 Age 15 and Paralyzed Thinking I could be on TV to Showcase it is Possible

15:00 Har to be Disabled and Shy Since You Have to Ask for Help or Your World is Small

16:00 Can’t be Shy because You are Most Likely heir First Time Meeting a Disabled Person so First Impression Matters

18:00 Really Scared Coming Back to School After Paralyzation but Realized I Was the Same, Just Sitting down

19:00 Used to Use the Wheelchair as an Excuse to Not go But There Isn’t any Excuse

24:00 Disability People are Just Waiting for Nothing Where Really it Comes From Within to Do Anything Great

25:00 You are Insecure Yourself. The Disability May Enhance it but it Comes Down to You as a Person 

29:00 Her Paralyzation Story is so LAME. Woke up with a stomach ache and became Paralyzed

39:00 I’m a Little Bit Dangerous but Like How Could it Get Worse Than in a Wheelchair

Meet Jed. Dealing with an inflammatory disease called Ankylosing Spondylitis where his spine is fusing which is causing to be less flexible. Start off with moving 7 times to finally moving into a log cabin on a farm. Being a terrible athlete growing up, he knew what normal pain was then not normal leading to be diagnosed at age 12 and in pain everyday since. Setting boundaries is important to keeping the pain the lowest as possible so like no piggy back rides or lifting heavy boxes. Problem with this disease and many others that different things work or does not work so don’t get discouraged. It’s a journey to self experiment to find the best relief for your symptoms. Talk about diets and while trash and sugar is not good for you, sugar makes me happy. I know it will hurt after but can’t deny ice cream and need good balance in your life. Finish off with we are gonna be in pain no matter what so might as well enjoy it anyways. 

Meet Brooke. A badass Crossfitter who was at one point the top 20 strongest women in the world. Born without a hand, wrist and elbow, we start off with if she disabled and proud. Than to her hate for prosthetics. Since she is able to hide her disability, does the relationship change with people when unveiling her disability. She was born with her disability, we believe ur brains have changed to be more problem and how to adapt to the world around us the wasn’t made for us. Talked about the word “disability” and if it is a bad word. Host doesn’t really think of being disabled, but having a disability. Phrasing matters a lot here.

Meet Adriana. A model and a Friedrich Ataxia advocate where her nerves are diminishing over time. She writes in her journal her goals for the day so we talk abut her goals for the day. Talked about accessible fashion and her capping project to create accessible clothing who are sensitive to certain materials.Talked about internship to become a leader. Went back to her past when she wanted to become a dancer but plans obvious caned when confined to a wheelchair since high school due to her condition deteriorating. Talked about our friendships changing due to our disabilities.Finished up where’s the line between a good friend and caregiving and a friendship ended due to being too much of a caregiver. 

Meet Lexi. A licensed Child Life Specialist and Recreational Therapist. Her brother has FOP where his muscle turn into bones and locking his body into place. She has tons of hands on experience dealing the complexities of keeping a person as independent as possible. Can’t put it on a resume BUT the best experience you can get. Talked about the separation of being a sibling, a caregiver and maybe even a third parent?? Talked about the separation of letting a disability person being able to be reliant on themselves and not overly dependent on an adult if it is possible. Since Lexi is moving out of her family’s home to live with her husband, is family a huge part to want to stay near or will she let her parents deal with the special needs alone. Finished up with her brother didn’t have a rare disease, would she be in a completely different field of work? 

Meet Nicole. Dealing with Cystic Fibrosis and bilateral lung recipient. Started off why she has loss of hearing due to being on antibiotics so many times to deal with her infections. In 2019, her life changed dramatically. She was rushed to the ER where her lungs were immune to antibiotics and needing a transplant. With an FEV1 of 11% and 79 pounds married her boyfriend. Also received a $10,000 grant to do a play about Cystic Fibrosis/dramedy of her life. Then shortly received new lungs. Put her on the spot of which was her happiest event out of the three. She’s also an award winning author who wrote 5 books and onto her sixth one. With medical trauma with though her childhood, she keeps her childhood like nature to her but still be an adult too. Talked about missing school a lot and actually had the “cooties”. Talked about the “lick test” to get diagnosed with CF. and yes the doctor actually licked Nicole. Shudders* Finished up with why she always celebrate her 10th birthday because she wasn’t suppose to live this long. 

Meet Charlie(part 2). Talk about being men and if we feel masculine. Just being comfortable in your own skin but also being a provider in some ways. Talk about toxic masculinity and his hatred for alpha males. Charlie tells his perspective in being in an interabled relationship. Get onto the topic of personalities and if we are our true authentic selves on the internet or playing a character. It’s complicated as we have to be social chameleons with different guests and situations. Charlie is way more tame than I am so definitely give him a follow. Talked about if any insecurity before dating Gina for 6 years now. HUGE FEAT cause the dating market is abysmal. Finish up if getting a disability since birth is easier than later stage in life. 

Meet Kev. He is a certified peer specialist dealing with

Schizophrenia, Bipolar 1, Childhood PTSD, Anxiety and Inattentive ADD. Started off with which disease he wouldn’t have. Talk about childhood ptsd alternating your brain to be in survival mode 24-7. Was not properly diagnosed til 35 because he kept his real issues inside. He was aware of unwell he was. Was homeless for a long time and just trying to get through. Even raising a son during that time. Now as a peer to peer specialist, how do you handle your demons and have the capacity to care for others? Talked about his guitarring to make money when homeless, express his feelings where people listened and a way to help his healing process. Talked about trauma induced care in the hospital setting. Finish up with how “Critical Role” and Dungeon and Dragons kept him going when he was all alone. 

Meet Amo. Author of a book called “Walk Like a Man.” An autobiography of a boy named AJ who visits a therapist over three decades. Start off with how was dealing with depression and cerebral palsy in an Asian household. Revealed to be in therapy for over 30 years but never told anybody till recently. Not his wife or kids or family due to the taboo subject of men in therapy. Talk about why men can hang out for 10 hours and not talk how we feel. As stigma is less, it is still rampant with men and the Asian culture. His company called Disability Direct helps disabled people create real life skills to succeed versus what he saw when he went to a day care and was made to create a table and basket weaving. Hated to be pigeonholed. He walked out, started a company then formed a contract with said day care to improve the lively hood of the disabled community. Host makes controversial point that disabled people are too coddled and hurt them in the long run. 

Meet Anna. Start off with why Anna uses kancer with a “k” and not a “c.” Having stage 4 colon cancer and Cystic Fibrosis creates a deadly combination of having similar symptoms but knowing what. After a dime tumor near her groin, she fought to get a biopsy to see what was really happening. Turns out to be colon cancer and had to get a colposcopy to see how advanced the cancer was. Getting chemo every 2 weeks is a new chronic condition and necessary evil I have to deal with. Talked about getting scanned every 2-3 months causing “Scanxiety.” Then we got onto the topic of being huge wrestling fans. The Rock even made a customized video for Anna that he posted on his social media. He got Anna through times. Her body seems to be fighting her but she always kicks out at 2 and 7/8. 

Meet Roxy. A Multiple Sclerosis vamp bimbo fashionista. First talk about being a vamp bimbo. A fashion designer behind the scenes but wanted to be more fashion inclusive so wanted to put my talents and myself out there. MS causes muscle weakness, spasms, tingling in hands, and feet, and blurred vision. Talk about body dysphoria and how it is a daily personal battle. I nitpick everything wrong. The not knowing is bothersome. If taking a photo myself, I can control my angle and self till it’s satisfactory. After a while, I have to accept the flaws 

And move on or it will forever hold me back. Finish up talking about 5 year plans of Roxy wanting bring accessible fashion to more eyes that ACTUALLY LOOK GOOD. Lack of funding and information is the biggest hurdle to overcome. 

Meet Ashley and Nikki. Sisters who were in a tragic car accident and now permanently confined to a wheelchair, but different levels of disabledness. Start off with a quick lightning round to start to see who’s more annoying etc. Since being in the same accident, was grieving done together or separately. A chat of wanting to be more individualistic instead of I’m this person’s twin. The comparison is too annoying; otherwise happy as a twin. Chat about seeing other for the first time since the accident. Get onto the topic of why we join support groups. All for different reasons. Finish off with trauma dumping and just want to talk about our hobbies and not be disabled since we are disabled 24-7. 

Meet MB. Has Fibromalgiya where it feels like a corset full of pain, a sunburn but instead of the sun its fire or or or feels like a cavity but it in your skin and its everywhere. Start off with her diagnosis journey at 21 but always hurting since very young. Got long term mono and a concussion and life went downhill for a while. Talk about anxiety which is crazy since MB is into improv which is the most anxiety inducing activity one can do. Her Fibro has increased her anxiety and depression and type 2 bipolar thinking it was all the same but really different entities. Also having loose joints and eventually diagnosed with hyper mobile Ehlers-Danlos Syndrome which is a whole other can of worms. Spilling coffee is also a symptom of Fibro where she has a whole light just spilling coffee. Finish up which disease she would not have and GO TO THERAPY. Helps be more mentally focused.

Meet Charlie. Has Cerebral Palsy since birth. Start off with why 99% of the mental health advocacy are women. Then get onto the topic of good family being treated normally and while having a disability sucks; there is is much you can still do. Charlie doesn’t have any crazy stories except dying 7 times at birth so he peaked at birth. Being disabled and active is a privilege due to family and also where you live. Understanding anxiety and depression is something you cant teach, but only experience. At the same time, you gotta push through the mental block or your world will be very very small. There is no hand book and really got to figure it out on your own. It’s very hard living since adding disability is another layer that you cant experience until you have it. 

Meet Nitika. A life coach dealing with Psoriasis with flaky skin and itchiness like Chicken Pox. Started when she was crying in her closet and getting a spiritual message of “it isn’t about you but helping others.” Talked about her Indian holistic culture helping, but modern medicine has helped more to be in better shape. Was able to get out of bed and live a better life. A good healthy life is beneficial to a good mind and body health. At one time moved to India and did acupuncture twice a day, 6 days a week for 6 months straight to try to combat bad symptoms. Host makes bold statement that Indian culture is toxic but Nikita refutes it as more complicated. Talked about life coaching others that want to be helped and not what thriving looks like. Finish up talking about her event of ChronicCon to have a day of empowering and sharing stories and tips to help the chronic ill community. 

Meet Courtney. Jumped into a time machine to 12 years old where she was told to get a boyfriend and start masturbating to relieve her high pain levels and sickness. Ended up being Hyper Mobile Ehlers Danlos Syndrome with dislocating joints. Get onto the topic of mobility aids and how it feels not me without them at this point. She spends all her energy empowering others and giving resources to make real change like marching on Capitol Hill and talking to Senators. Has a huge love for politics and creating change for the current and next generation of disabled folks. Then get onto the topic of poetry and how it helped with her unexplainable pain without a diagnosis. Asked if disabled people are just waiting for an opportunity or if people too exhausted to be involved.  

Meet Annie. Dealing with EDS, mass call activation syndrome, POTS, Gastroparesis and Instestinal Dysmobility. While that is a lot for one person, it’s not the reason she is in a wheelchair. Her muscles are damaged due to Hypokalemic Periodic Paralysis which is the temporary attacks of extreme muscle weakness or paralysis which is caused by muscle cells that do not have the right balance of chemical to work property. Start off with how she slept which is difficult due to painsomnia. She also has paralysis so it’s difficult to wake up. Talk about her big “Sick Day” in an art studio where everything changed. From walking a lot to using a walker/cane to a manual wheelchair to a custom wheelchair(THAT GLOWS IN THE DARK)since the next attacks of symptoms are unpredictable. Ask about if she has a happy relationship with her wheelchair. Get onto the topic of seeing a disability life coach because of having lots of self doubt. Talk about the “queer tax” she has with Chick fila and is being haunted by them. Finish up talking about her port to help with her symptoms. 

Meet Dominque. Has a neurovascular condition and subsequent connective tissue disorder leading to nerve damage on her left side. Start off with when the last she felt normal. She was genetically gonna have a rare disease, but tennis sped up her journey at the age of 15. Started Invisiyouth to provide resources for the chronic-ill community. Use humor to help the community be more relaxed when asking questions about their deepest part of their lives. Each person has a different way of coping and if my way doesn’t work/help then it it’s totally okay and to find a different way. Throughout the episode, the host flipped the script used Dominique’s podcast segments  like “BREAK the Glass Ceiling,” sooo “That Oneee Time.” And “Path to Power.” Questions include: is Advocacy worth it?, an embarrassing story about your disability, and whatnots you out of bed in the morning?

0:00 Beginning 

3:29 Helloooooo

7:00 Swung my racket and heard a loud pop then burning all throughout arm

9:00 After a year, I knew my future will be forever changed

11:00 my condition is deceiving where I look fine sometimes and other times im using a cane and other devices

14:00 I don’t remember the last time I wasn’t in pain

20:00 Framed “Invisiyouth to be sarcastic and humorous and positive around the framework of what helped me 

22:00 Humor lets you mentally and emotionally unpack so you feel more comfortable opening up

27:00 Wanted to stay in our lane of helping and it isn’t for everyone 

31:00 “Breaking the glass ceiling” Do you advocacy is a waste of time/effort?

39:00 “Sooo That One Time” where Dominique tells a story so host can sit back and listen 

42:00 “Path to Power” What gets you up in the morning?

46:00 Ultimate goal for charity is for our resources to more visible to young people 

Meet Lainie. A body positivity and disability life coach. Has Charcot Marie Tooth Disorder where her nerves are slowly being damaged and her muscles are atrophying unevenly. Start off with what’s our self esteem level from 1 through 10. Reason I ask because Lainie BEGGED to go to a fat camp when she was young. It was body dysphoria whee she was averaged weight. Interesting dynamic of her thinking she was fat, but really wasn’t versus her body actually deteriorating on the inside. It is an invisible disease as in she can hide it as long as she has her leg braces on and long pants/shoes. Kept making excuses for herself and simply not trying. Thanks to her vanity, she started working out to remain strong as long as possible.  We think that some people are simply unmotivated. Has her own fashion blog to help disabled people be both stylish and comfortable since a lot of clothes are useful but looks awful to wear. 

0:00 Start

3:15 Helloooooo

5:00 Body dysphoria with weight

11:00 My hands are greatly affected

15:00 Hard to walk without braces where I trip and unbalanced

19:00 body dysphoria to start working out and vanity

19:40 made a lot of excuses because of mt diseases but really I didn’t try/find a work around

25:30 living your best life with a disability is the most attractive thing you could do 

33:00 a lot of people are unmotivated and low self esteem

Meet Anne. Has Cone Rod Dystrophy which includes decreased sharpness of vision, increased sensitivity to light, impaired color vision, blind spots in center of the visual field and partial peripheral vision. Start off with if she’s quieter due to her being a woman, Asain or disabled. The Asian’s tradition is extremely tough and instill less toxicity with her family. Talk about living in Canada being surrounded by white folks basically and changing traditions. Diagnosis came late due to parents having limited English and just accepting her “normal.” With being diagnosed late in her 20s, she developed strong muscle memory and memorization skills to compensate for her disability. Finish up with new daily persistent headaches where she had to quit her job and be on bed rest dealing with a chronic illness and depression.

Meet Eric. A Brain Traumatic Survivor when a car drove right into him while texting. Start talking about the personality shift since suffering brain damage. We speak the same language but we really don’t. Life is like a snow globe where all the pieces settle inn a different place and have to go along with it. Talk about being men and how women look at disabled people differently since some don’t have a career or long term goals and is a turn off among other things. Talked about our differences after being disabled. Losing everything from career to finance to group of friends. Talk about Vegas and how to count cards. Perfect segway of people with bRAIN injuries to go down rabbit holes. Asked why he wants to forgive the guy who hit him. Finish up with his love for racing and ironman and helped a lot to get out of depression.