Far from Ordinary: Enjoy and Binge NBC’s Ordinary Joe and Hope for a Second Season of this Wonderful Gem
My life with Covid around is pretty boring, but one of my highlights from the past few months have been watching Ordinary Joe weekly and just being totally in awe and amazingly happy with how this show addresses just about every aspect of living with a disability. Recently season one of Ordinary Joe concluded and if you haven’t heard of this show I strongly encourage you to binge all 13 episodes and join me and others to press for another season.
Ordinary Joe is very heartfelt and very bingeable, but you need to pay close attention especially in the first episode as the story takes place in three different parallel stories. NBC offers this description of Ordinary Joe: “Life is all about the choices one makes -- and sometimes, what one does in a single moment can change everything. Joe Kimbreau faces one of these decisions at his college graduation, leading to three parallel stories that diverge from that night. Each path finds Joe with a different career -- as a nurse, a police officer or a rock star -- along with different friendships, relationships and family lives, showing the unexpected ways things change -- and stay the same. But when it comes down to it, there is no "right" choice; no matter what happens, Joe's life is always messy, exciting, tough, unpredictable -- and beautiful.”
All 3 Joes have a son with spinal muscular atrophy, SMA, played by thirteen year old John Gluck who also has some form of muscular dystrophy. John Gluck plays Christopher, Lucas and Zeke, three different variations of the same boy in each of Joe’s three different life paths. Nurse Joe’s son’s name is Chris and gets the most screen time as this version of Joe’s son, officer Joe’s son’s name is Lucas and rock star Joe’s son’s name is Zeke. After a couple Google searches, I uncovered that show’s co-creator Garrett Lerner, who has a son Zeke, 21, with SMA type 2, knew from the beginning he wanted to cast someone with an actual disability, not simply have an actor learn to use a wheelchair. He solicited auditions from children across the nation through the SMA and social media community and ended up with an estimated 60 to 80 responses. John Gluck quickly shot up to the top three finalists, and his interaction and improvisation with the show’s star, James Wolk, over Zoom sealed the deal for the Ordinary Joe team and you can certainly tell they made the perfect choice. John Gluck’s personality, humor and authenticity shines throughout his performances - plus an occasional song.
The writing of this show is absolutely amazing and you can definitely tell it was created by someone who loves someone close to them who lives with with a disability. The fall finale of Ordinary Joe, episode 9 “Thankful”, addressed issues hiring personal care aides and was one of my favorite episodes. Another episode kind of touched on the issue of aborting a disabled baby too and another episode featured storylines around preparing for the big spinal fusion surgery as well as the day of surgery. Notable disability influencer, YouTuber and writer Shane Burcaw and his wife/girlfriend also guest starred in one episode where Chris and his dad and personal care aide attend an expo, which also made me really really happy. The season finale was beautifully written and interwoven, I’m going to try really hard not to give away any spoilers but my top three favorite things about this episode were: dialogue between Chris and Joe about how airplane personnel destroy some extravagant number of power wheelchairs every year which was 100% on point and also led into another sweet conversation about adapting your dreams, Joe’s road trip detour to surprise Chris and learning the origin of Chris’s name.
In addition to disability, this show also has strong ties to 9/11, blue lives and the impacts of alcohol use in excess. I think we all can relate to second guessing decisions we have made in life as well as the what ifs and Ordinary Joe is truly a wonderful gem that will not disappoint!
*All of season one is now available to stream on Hulu and Peacock, as well as directly through NBC.
Hallmark Movies & Mysteries Highlights Autism in their Holiday Celebration with Holly Robinson Peete’s Our Christmas Journey
Being a disability advocate and a sucker for all types of Hallmark and Lifetime movies and living in the suburbs of Philadelphia, it caught my attention when I saw long-time autism advocate and Philadelphia native Holly Robinson Peete discussing her new movie and sharing her connection to the film as well as her excitement over Hallmark’s decision to cast an actor on the autism spectrum to play her character’s son.
Our Christmas Journey premiered on the Hallmark Movies & Mysteries channel on December 4th 2021. Hallmark Movies & Mysteries’ website offers this somewhat vague synopsis of the film: “As a single mom (Holly Robinson Peete) and her teenaged son (Nik Sanchez) with autism come to a crossroad during Christmas, she must learn to let go so he can flourish as she finds her own heart healing in unexpected ways.”
The film follows a family made up of a grandmother and a divorced mom and dad with two children a daughter and a son with autism over Christmas exploring the option of a residential school for their son. The film did a fantastic job keeping the portrayal of autism authentic and I enjoyed watching the family dynamics and challenges especially over times of both transition and tradition, as well as the young man’s communication methods.
Holly Robinson Peete not only starred in the film, but also served as the film’s executive producer and has been very vocal about her overwhelming love for this film. Holly Robinson Peete and her husband, retired NFL quarterback, Rodney Peete have been long time autism advocates having an autistic son and starting the nonprofit organization the HollyRod Foundation to support families affected by both autism and Parkinson’s disease. Their son R.J. Peete, 23, is on the autism spectrum and works as a clubhouse attendant for the Los Angeles Dodgers, which Holly said is his “dream job.” In a statement, Holly Robinson Peete said: “I am making this movie for my son RJ, others with autism and their families. I am grateful to Hallmark for bringing this story to screen with authenticity, respect and hope.” Holly Robinson Peete said on Twitter about the movie: “I’m just overwhelmed w/ emotion because I have wanted to make a movie about an #autism family making transitions at #Christmas for a while.” She also wrote on Twitter about Nik Sanchez’s role in the movie: “There was not one chance I was going to executive produce a film about #autism without proper representation.”
Our Christmas Journey is a welcomed addition to Hallmark’s holiday lineup focusing on families and inclusion. To learn more about the film and see when it is airing head on over to: https://www.hallmarkmoviesandmysteries.com/our-christmas-journey
Thoughts on The Year of the Buttered Cat: The Next Big Time Book Revolving around disAbility for Families and Middle Schoolers
I have had the privilege of being one of the very first readers of my friends Susan and Lexi Haas’s book The Year of the Buttered Cat set to be officially released in April 2021 and was asked very nicely to write a review of their book, which was honestly one of the cutest and most thought provoking things I have read in awhile… and yes there is an actual buttered cat in the story too!
But before we get into this amazingly mostly true book, I should probably share how I became friends with Susan and Lexi Haas and explain a few more things about dystonia caused by cerebral palsy (CP) or a brain injury (also known as secondary dystonia). Both Lexi and I have cerebral palsy and dystonia, which basically means our bodies do the exact opposite of basically anything we want them to do - twisting every which way except the right way but we are extremely bright. Unlike me, Lexi’s cerebral palsy was caused by her untreated newborn jaundice (yellowing of the skin caused by too much bilirubin) leading her to develop kernicterus. When I was around 12, my dystonia and abnormal movements got much much worse. Out of the blue I started shaking, similar to a seizure but awake and aware. My body would shake so much I would ask my mom and dad to sit on me to make it stop, which it didn’t. It started out a day or two and then it would stop, then sometimes weeks. It was like I was running in a marathon, I couldn’t stop moving, couldn’t sleep or eat. I was in and out of hospitals and doctors didn’t know what was going on since cerebral palsy doesn’t get worse and I clearly was. I was diagnosed with dystonia (similar to Parkinson’s - see my dystonia awareness post here). I tried numerous medications some would work short term but eventually nothing was helping and at age 14 I had deep brain stimulation (DBS) surgery and two deep brain stimulators implanted. It helped with my movements, but my speech got worse. DBS works instantly in patients with Parkinson’s (you can see them stop shaking instantly) but with dystonia there is a lot of different programming involved. It’s always a guess and wait and see for results, some have been ok and some bad so we’ve learned to accept the settings in fear that I would be worse. DBS for dystonia is also often preformed more frequently and with more success for primary dystonia, dystonia without a brain injury / was caused by genetics, than secondary dystonia. Before I had DBS I found an article from ABC news about a little girl in North Carolina named Lexi with CP specifically caused by kernicterus and who had DBS at age 7. I reached out to Lexi’s mom Susan and also gave the article to my mom, dad and all my doctors at A.I. DuPont Children’s Hospital who all thought I was completely nuts for wanting DBS.
Okay then! Now back to the book! Like I said, The Year of the Buttered Cat was honestly one of the cutest and most thought provoking things I have read in awhile. It really made me smile and I mentioned to Susan that it reminded me of Wonder by R.J. Palacio and in my opinion has the potential to be as big as a hit as Wonder. The Year of the Buttered Cat has a dual timeline, which was really cool, with one timeline being told by 13 year old Lexi during the 24 hour countdown to her second deep brain stimulation surgery, and the second timeline being the year Lexi discovered what happened to her and that she would have a disability (Lexi at ages 5 and 6). I could really relate to Lexi at both ages and loved her deep inner thoughts as well as her relationships with her family and friends and of course the wizarding world of Harry Potter.
I promise I will try to not give spoilers or at least not too many, but to try to make things run smoother I think I might break down what I loved about the story from both ages of Lexi’s story.
I loved that Lexi’s voice was front and center for the entire book and her love of Harry Potter was pretty cool too (I’m not really a Harry Potter fan but my super cool neurologist is).
Lexi ages 5 and 6
When Lexi was five years old and on the verge of shutting out the rest of the world, she began a lonely quest to find her “missing” body. After the family cat went missing, too, and a mysterious letter appeared, she reluctantly enlisted two budding friends to aid her search. But when these friends also disappeared, Lexi had to learn new ways to reach out to the world to save her friendships and uncover the truth about what happened to her as a baby.
Lexi age 13
Having undergone DBS around the same age, I really understood all the hopes, fears and all of the emotions Lexi felt. You have so much hope but at the same time it is scary. What if this does not work? What if something goes wrong? What if it makes things worse? I love the built-up suspense of the 24-hour countdown to surgery too.
This book is a great read for anyone because we all can relate to times when we feel our voice isn’t heard. Following Lexi through her journey shows life from a perspective that others often overlook. It can be lonely to be unable to communicate at the speed of those around you and we all need to be more patient and understanding regardless of how we communicate or how we move.
Overall I do highly recommend this book and hope you will check it out and end up enjoying it as much as I did! You can pre-order your very own copy of The Year of the Buttered Cat here: https://www.pennycandybooks.com/shop/buttered-cat
Lexi and Susan have also made a short promo video promoting their book The Year of the Buttered Cat https://www.youtube.com/watch?v=_t5GR9OOHNU&feature=youtu.be
And if you are interested in following more of Lexi’s adventures she also has her own website http://lexihaas.org
Fa La La La Lifetime Brings DisAbility into the Holiday Celebration with Christmas Ever After
First, I am a sucker for Lifetime movies… so when a friend texted telling me Lifetime was premiering a Christmas movie featuring an actress who uses a wheelchair in real life I got really excited!
Christmas Ever After premiered on Lifetime on Sunday December 6th 2020. Tony award winner and ground breaker Ali Stroker, who had a spinal cord injury at the age of 2, played the main character Izzi Simmons, a romance novelist. Ali Stroker was the first performer in a wheelchair to win a Tony award last year for her role in Broadway's revival of "Oklahoma!," Stroker is back to breaking barriers and Lifetime’s first to star a lead actor with a disability. I loved that her character was a writer and having won a Tony award I was also happy she sang one song in the film!
From Lifetime’s website: “Popular romance novelist Izzi Simmons (Tony® winner Ali Stroker) spends every Christmas at her favorite snowy bed & breakfast, but this year, she’s faced with an impending deadline and a severe case of writer’s block. Luckily, inspiration strikes in the unlikely form of the B&B’s new owner Matt (Daniel di Tomasso), who bears an uncanny resemblance to the handsome hero from (the covers of) Izzi’s novels. As both partake in the lodge’s annual itinerary of Christmas activities, Izzi’s writer’s block is cured and the first pages of her and Matt’s own love story may just be beginning.”
I think Lifetime did a good job with representing a person with a disAbility in this film. First, by casting an actress who uses a wheelchair in real life. And secondly, showing an inter-abled romantic relationship - and the complexities, desires and wonder of one! I applaud the use of language such as “Go for a push” instead of “Go for a walk”. I am happy they showed how Izzi gets into bed, but they could have also shown how she drove her car and also got in and out of her car. There were no references to Tiny Tim which was fantastic, as he’s most associated with disabilities and Christmastime and I’m just not really a fan, although Scrooge was mentioned once. Lastly, I loved loved loved the relationship and mentorship between Izzi and Matt’s young daughter who also dreams about becoming a writer.
There is also a twist to this story that will both give you goosebumps and melt your heart!
You can learn more about the film and watch the movie’s trailer and entire movie on Lifetime’s website here: https://www.mylifetime.com/movies/christmas-ever-after
In 2012, R.J. Palacio released her bestselling book Wonder. Wonder tells the story of August (Auggie) Pullman, a boy who loves to play around and just be a 10 year old boy going to school for the first time. Unlike everyone else, Auggie has some unique facial differences and encounters many challenges, especially the harshness and judgment of others. R.J. Palacio has said she was inspired to write Wonder by a chance encounter she had with a young girl while she was at an ice cream shop with her two sons. After her son saw the child and began crying, she quickly turned his stroller around and pushed him away to protect the girl from his reaction.
Over Thanksgiving weekend 2017, my mom took my two sisters and I to see the recently released film Wonder directed by Stephen Chbosky and starring Julia Roberts, Owen Willson and Jacob Tremblay. This film really resonated with all of us and, in my opinion, I believe it was the best movie we all saw in a long time and is a great family friendly film. I actually saw it in theaters a second time with my friend who recommended the book to me and her daughter. Some within the disability community have been a little upset with Jacob Tremblay's casting as an abled-bodied actor, but I have to hand it to him - he did such an awesome job!
This movie and book really touched on many different perspectives, focusing not only on Auggie's point of view, but also his sister's, parents', friends', teachers', and strangers' experiences, and how they are all interconnected. The book is a perfect fit for third through eighth graders, but can be enjoyed by all ages of adults and children alike. The audiobook is narrated by an entire cast too. R.J. Palacio has also published an accompanying picture book, We're All Wonders (2017), for even younger readers.The overarching theme of Wonder is to choose kind.
When I started kindergarten, my teacher made a huge deal about how I had cerebral palsy, even though all the girls only wanted to know if I liked Barbies. My parents remember me coming home and announcing to them that I have cerebral palsy like they did not know. They also remember me insisting on having them tell everyone we met, even strangers in a store, that I had cerebral palsy.
When I started college, I felt very alone. I guess people were unsure how to talk to me, or did not know that I have a lot to say and can communicate. I feel fortunate that I have been able to help change the conversation on campus and host events including a book discussion of Wonder and screening of the film Wonder in November 2018, but that does not discount how disheartened I felt for months.
Everyone is unique and imperfect.
Everyone deserves a chance to be accepted, appreciated, included, and, most importantly, themselves.
By choosing kind, we realize we are all more alike than we are different and can embrace the power of positivity.
This is important to remember all year round, but especially at Thanksgiving and throughout the holiday season.
Wonder by R .J. Palacio can be found on Amazon here: www.amazon.com/Wonder-R-J-Palacio/dp/0375869026
We're All Wonders by R .J. Palacio can be found on Amazon here: www.amazon.com/gp/product/1524766496/ref=ox_sc_act_title_4?smid=ATVPDKIKX0DER&psc=1
You can also view the trailer for the movie Wonder underneath pictures from the film screening at Holy Family University in Philadelphia, PA hosted by Holy Family University's club Interdisciplinary Disability Education and Acceptance (IDEA) which I founded.
And one final note, when the film Wonder was released in November 2017 ABC News' 20/20 featured a "Real-Life Wonder Boy" and introduced the Newman family who's teenage son Nathaniel has severe Treacher Collins (TC) syndrome — a craniofacial condition. In January 2020, the Newman family released two memoirs: Normal: A Mother and Her Beautiful Son by Magdalena Newman and Normal: One Kid's Extraordinary Journey by Magdalena and Nathaniel Newman. Stay tuned for my thoughts on these!
*Warning this review contains spoilers and discussion of sex which may be inappropriate for younger children*
I did not like AT ALL! I would say skip, skip and definitely skip!
First, I will tackle Cammie McGovern’s YA - young adult - debut Say What You Will (2014). McGovern’s heart was in a good place, I think - maybe? I honestly don’t know what in the world this woman was thinking in her YA debut. But... Dancing Daisies (Just Be: book 1) by Sara Psyzka, Switch the Song (Just Be: book 2) by Sara Psyzka, Good Kings Bad Kings by Susan Nussbaum, The Running Dream by Wendelin Van Draanen, This Is Not A Love Scene by S. C. Megale and My Perfect Imperfections by Jalapa Williby are much much better portrayals of how typical a disabled teenage girl who uses a wheelchair and/or communication device really is. Out of My Mind by Sharon M. Draper, The Chance to Fly by Ali Stroker and Roll with It by Jamie Sumner were also better portrayals of how typical girl who uses a wheelchair and/or communication device really is and geared towards younger readers, say late elementary schoolers and middle schoolers. In comparison, McGovern paints us as pathetic, coddled and willing to have sex with whoever will just say hi to us. It was just so degrading and far fetched!!!! The last half of the book the main character, Amy, who is a senior in HS with cerebral palsy who uses a walker and communication device, has sex with a boy she has no interest in just so she could "know what to expect" with the guy she does like and then has his baby, while whining about the guy she does like (not the baby’s dad). The girl’s parents were also very controlling. Ugghh!!!
I thought I would give Cammie McGovern another try with her next YA book A Step Towards Falling (2015), but I cringed in my seat all over again. This book deals with the assault of an intellectually disabled high schooler that is witnessed by two students who do nothing. It was full of stereotypes about those with intellectual disabilities and did a horrible job dealing with sexual assault - nothing got resolved. The two students who stood by were made to do community service with special needs young adults which led the book to be screamingly berated which messages like "Don't be judgmental" and “Special needs folks can teach you things". Instead, read Good Kings Bad Kings by Susan Nussbaum (abuse, independence, and inter-dependence) or The Running Dream by Wendelin Van Draanen (high schoolers realizing those with disabilities have purpose in a less “able-bodied people are heroes who can learn so much” way) or Switch the Song (Just Be: book 2) by Sara Psyzka which features a chapter on how individuals with physical disabilities feel about individuals with intellectual disabilities providing a rare honest glimpse into the fragmentation of the disability population and how people with disabilities tend to feel about each other - topics very hard to put into words. Girls Like Us by Gail Giles also handled sexual assaults of two young ladies with intellectual disabilities much better than Cammie McGovern.
Cammie McGovern has since published another YA novel Just Breathe (2020), as well as two books for middle schoolers Just My Luck (2016) and Chester and Gus (2017). She also has a few books aimed at adults such as Eye Contact (2006) and The Art of Seeing (2007).
Should I give Cammie McGovern one more chance? Or just move on? Let me know in the comments!
And even though I am not a Cammie McGovern fan per say, if you would like you can still check out her author page and books on Amazon here: www.amazon.com/kindle-dbs/entity/author/B001IXME6G?_encoding=UTF8&node=283155&offset=0&pageSize=12&searchAlias=stripbooks&sort=author-sidecar-rank&page=1&langFilter=default#formatSelectorHeader
From an early age, I have been an avid reader and have always loved books. My mom and dad, mostly dad, would often bust on me (and sometimes still does) and call me Matilda. My unique position in the world around me has allowed me to view media in ways others may not. I enjoy books and movies that feature characters that may be different in some people eyes (whether it’s a disAbility, race, or something else) but not having their difference be the main focus of the book or movie. I have been told by many people, even some with doctorate degrees, that I have a gift for pinpointing what a book is trying to teach or highlight and provide a personal connection as well as making others feel like they also have a personal connection to the book.
My all time favorite book is My Perfect Imperfections by Jalpa Williby. My favorite non-fiction books are Inside My Outside by Sara Psyzka and Ghost Boy by Martin Pistorius. My favorite audiobook is Good Kings Bad Kings by Susan Nussbaum.
Write something about yourself. No need to be fancy, just an overview.