Tag: tv

Legally Abled Podcast: Review of Special on Netflix S1E1 – Cerebral LOLzy

Legally Abled Podcast: Review of Special on Netflix S1E1 – Cerebral LOLzy

Transcript: “Hi everyone, this is Ashley Jacobson I’m a disability rights attorney, as well as a disability counselor and assessment specialist, a disabled woman. And this is the Legally Abled Podcast. 

I mentioned that one of the things I was really excited about doing with the podcast is reviewing media that involves the disability community in some way shape or form.  Historically, TV and movies have gotten disability wrong.  And so I’m really thrilled that lately, there has been a push for disabled writers creators, producers and actors to be more involved in TV and movies.  I think especially with streaming services, this is allowed more diverse content to reach the masses. 

And one thing that I love with the show I’m going to talk about today is that it talks about disabled adults.  Often when you see disability in the media, it involves kids, and then the non disabled community doesn’t have a full picture of what it’s like to live with disability as an adult. And so they might not see disabled people dating getting married boating like all of these things that non disabled adults do. 

And when they don’t see that in the media, and they’re not hanging out with disabled people in their social circles, they might not realize that we’re a lot like everybody else.  And so, the show I’m going to talk about today is special on Netflix, it’s such an excellent show. It’s for adults, I would say, it has adult themes in it.  So if you’re listening to this podcast and kids around being put in headphones. And I would recommend watching it first before you have, especially like young children, watching it, But I wanted to talk about the show special because it has one season already the new season comes out, may 20. Very soon. It’s based on a book that was written by Ryan O’Connell, who is one of the executive producers writers he’s the main actor and he has cerebral palsy. 

And I love how funny the show is, and I also love how it touches on intersectionality.  Because, Ryan is a gay disabled man and he’s learning how to navigate this new season in his life, where he’s starting a new job, and fading and he’s putting himself out there more and making new friends at work and pushing himself to be more independent and even move out on his own.  And it does all of this with such humor that I love. 

So I’m going to dive into season one episode one. The title of it is Cerebral LOLzy, like Cerebral Palsy but with LOL, which is great. And there’s such a brilliant opening the main character Ryan so it’s the same name as Ryan O’Connell and but Ryan is a young white man.  He’s about medium height and builds he’s not he’s wearing these really trendy super cool glasses and he’s walking along listening to headphones, happy as can be, and falls. 

And as he falls, he gets up and keeps going.  And I say, a pretty young kid, maybe like seven or eight walks up to him and asks if he needs help if you need him to go get his parents, and the character says no and just start swapping way we can send your walking funny you need to go to the hospital.  He and Ryan stops and walks back and says, “Oh, it’s, it’s not my fault I had a thing. And it’s disability resulting from damage to the brain before, during, or after birth” and the kid start screaming and runs away. 

And it’s such a classic, really funny well written scene.  Because so often, kids especially have their first interaction with somebody with a specific disability and they assume that they need help or there’s something seriously wrong that they need to step in and get a parent to assist with, and, you know, it’s also just for me I could relate to the following sighing and getting up, because there are many things throughout the day where I might lose balance have muscle weakness, have my pain, get worse and be like, “Oh, here we go.” 

So it just really touched on how disability can just become even the things that are hard and annoying can become a normal part of our day-to-day life and we just keep it going. And so then, the next scene in the shovel Ryan’s with at the time I wasn’t sure if it was a personal trainer physical therapist, I think it was a physical therapist type of guy. He’s white and bald. He’s stretching Ryan’s leg out, and he’s explained to the trainer or the physical therapist what happened. And the guy says, people don’t really understand your disability, it looks different on everybody which is true. 

And then, one of the first signs that we’d be touching on dating in the show and sexuality is when in this scene Ryan is admiring another person’s backside in the facility where he’s getting the physical therapy, and the therapist is something like say that for grinder, and that’s when we learned that Ryan is day and I love how the show in the first one minute 40 seconds hits on disability and sexuality and a really authentic way, and doesn’t hide that at all. really is upfront about it, which is great because that’s the reality if you’re an adult with a disability. 

Sometimes on disabled people think, “Oh, you don’t date or you don’t go on dating apps,” and that’s not the case.  And so, I just really appreciated that from the start they touched on dating and disability and sexuality.  And then, in this same scene you see, I’m still getting over Covid so if you hear me coughing. That’s why, but in the same scene.  Ryan says something that I think a lot of disabled people can really relate to and he says, sometimes we wish I were more disabled like I’m not able bodied enough to be cool in the mainstream world, but I’m not disabled enough to be cool in the disabled or the PT world, and his physical therapist says you’re lucky, privilege and you need to get over it. 

And Ryan says it’s hard out here for again. And I just thought that was so funny. 

That he responded like that but it also touched on how in the disability community.  There’s such diversity when it comes to disability type of symptoms and how it can be affected by things like access to resources medication and therapies and treatment, education, and sometimes it’s easy as human beings to get competitive with one another, or to compare to other people situations. And so, for example, I know, living with autoimmune disease. 

There are times when my symptoms are things where I’m feeling internally, but other people aren’t seeing. And other times, there are things I’m feeling internally, and people are seeing because I’m having an tremors like tremors muscle weakness, I’m using a cane. But there are people who have disabilities where they are never passing as able bodied.  And so for example if I’m in an interview, or a meeting somebody over zoom, or video conferencing.  They might not realize right away that I have a disability.  And so these differences among us and the disability community are great, were intended to be just as diverse as the non disabled world, but it is sometimes, easy to compare and say I wish I fell more into this certain category or this community because I feel that would be better understood. 

And we all know that people say the grass is always greener on the other side. There are pros and cons to each symptom that you might have. Nobody is more or less part of the disability community if their disability symptoms don’t more or less effect them on a certain day.  And I know all of that and still sometimes we feel like we’re misunderstood, even within the disability community. 

So again, this is the first few minutes of the show, and they’re talking about disability dating sexuality identity, within and outside of the disability community.  And then suddenly, as Ryan’s leaving the physical therapy session, you start to see. Ryan, the person’s act acting chops, the physical comedy that he does on the show is amazing. 

It’s something that you don’t often see with disabled characters, usually because traditionally in the media they didn’t feel like writers and directors didn’t feel comfortable poking fun, and having like these comedic elements. 

But as he’s leaving. He gets just suddenly hit by a car.  And this car accident is something that repeatedly comes up throughout season one.  And it’s a source of comedy in a sense where of course if you get hit by a car, it’s not usually very funny, it could be very serious but Ryan gets hit any false, again, and he fractures and elbow and Josephs first car accidents goes pretty chill. 

And, but then as the show goes on, you see how people just assume that has cerebral palsy symptoms are from the car accident and the assumptions that they make from that are classic, classic non disabled people comments and I say that with love, sometimes.  Sometimes people without disabilities, truly just make natural assumptions that they’re not intending to be insulting about.  But anyway we’ll get into that later. 

So the next thing Ryan and his mom are hanging out around the house and he’s in the bathroom and he’s shooting himself and he cuts himself and his mom is right around the corner and starts like blogging with the tissue where he’s kind of space.  Ryan explains that he’s excited to start his internship at egg yolk, which is that kind of millennial site that publishes funny articles and such. 

And his mom says, but what about your CPE your cerebral palsy, they’re going to ask you to do these really difficult things like facts and print and Ryan jokes.  Well, the thing no one’s had to access the 90s.  And, you know, it’s funny that one faxing and printing to people of a certain generation might seem like really difficult things, whereas nowadays. They’re more common, like, well, not the faxing but the printing is more commonplace and emailing and taping all of these things that weren’t so common back in the day and so it’s just funny that his mom jokes about that.  But then it’s also kind of hinting a little bit too, when parents, raise a child with a disability, they’re used to advocating for them and stepping in and helping them when they are themselves, and preparing them for these life situations and Ryan is really branching out on his own and you see that as an episode goes on. 

But it makes really funny jokes, his mom like jokes about him being unpaid and it was like that’s rude. And he says it’s time for him to branch out because the kid died in a car accident, his obituary would have been Bleak Lively.  And so there’s a lot of really great writing.  Brian, we learn at this point is 28 years old, and he feels like he just wants to do more. You know I think a lot of people with disabilities can relate to this.  I know when I was in college is when I acquired disability.  And I was it was right before my, my senior year really not it was formally diagnosed.  But in grad school I was learning how to adapt to disability while going to get my masters in counseling people with disabilities, and learning things like about disabled identity and culture. 

And I had those feelings like am I going to be able to do what I want to do and I want to branch out I want to have a career and I don’t know exactly what that’s going to look like, but I know I need to go for it and push myself in a way that’s appropriate for me and my disability.  And so I could really relate to that with Ryan. 

The show cuts to Ryan at egg row, which is that website that he works for and his supervisor is demanding viral content.  And so, Ryan walks in and his supervisor sees him, kind of walking in with a little bit of a limb, and she says sorry hon cedar Sinai is around the corner and cedar Sinai.  For those who don’t know, is a hospital, medical center, and he explains that now he’s actually entered and he still does it. And so, the supervisor is asking for a funny story and Ryan provides kind of a cutesy funny thing, and the supervisor puts him on male duty and so he’s like, oh, shoot, like I don’t I, my first day, my first meeting, and I was put on meal duty. 

And there are some complications to him being on the Ltd, with his cerebral palsy, but in this meeting before we get to him opening the mail, his coworker who is this really funny outgoing smart.  Open appearing to be I think she’s Indian American woman, I would say she’s probably in her mid to late 20s, also on the show.  She’s a writer gets a ton of traffic on her articles, she was really successful but these articles are super open about like female genitalia. I will say, and so she essentially because she gets so many hits on her articles for the website. 

She pushes back on the supervisor, more than most people who work at a globe and it’s really very funny and integrated example of, you know, a really strong funny, talented woman, not taking crap in the workplace.  But anyways, his coworker who we don’t know her name at this point.  But she explained to Ryan that the supervisors, natural thing is exploiting the personal stories for page views. 

And she says it’s really scary to write about it but it can be healing once you own it, no one can take anything away from you. And so, Ryan doesn’t know what he’d write about because he says his life is so boring, which, again, is very poignant because non disabled people might think that living with disability is so traumatic and devastating always, and it’s always terrible, but this just shows that when you live with a disability, you know, disabled life can be just as boring as non disabled life.  It’s just a different experience. 

And so during this week I was hit by a car, and his coworker assumes that his disability is from that and, of course, and he and she was like what happened, expecting this devastating car accidents story.  And he says, oh, it just grace my elbow and she looks so confused that he doesn’t you know maybe walk the way he does because of the car accident. 

But then she doesn’t really push it too much.  Very accurate. Sometimes when you share an injury or an illness or any other form of disability. People feel uncomfortable sometimes asking more questions and so there can be these awkward silences sometimes.  But that being said don’t feel like you need to over share about your disability. I’ve had moments where I felt like I needed to over share. And sometimes I regretted it and sometimes I didn’t, but I just realized that if other people are uncomfortable with what I share about my disability that’s their problem and not mine. 

Anyway, Ryan returns to work, and his supervisor confronts him about how she sees him opening the mail. And he is really trying to open the envelope, and it’s difficult for him because of dexterity with his hands.  And it’s an even when he’s trying to open it and when his supervisor confronts him about like Why aren’t you opening the mail. Right. And he says, I have a dexterity issue and she goes over you homeschooled. 

And it’s just, again, perfect writing on the show on how disability can be misunderstood and how symptoms that were used to talking about all the time like dexterity and fine gross motor skills and mobility and accessibility.  These things that can affect come up often in our daily lives.  Sometimes I do this we’re all talk about it, because it’s just another thing it’s just another time mobility is brought up it’s just another time accessibility is something that needs to be addressed. 

And then I’ll forget sometimes that non disabled people don’t know these terms.  But then the co worker apologizes for the supervisor and it’s like, oh, it’ll be fine, like don’t worry about the supervisor being a jerk, and not understanding it’ll be okay.  The show then goes to Ryan, who he’s at home, and is practicing opening mail with a letter opener over and over again.  This reminded me of a lot of things that I went through. Prior to becoming a lawyer, especially. 

I have talked on my social media a little bit about how I was really.  I wanted to be very prepared for when I would be in a courtroom.  And what that would be like with my team with getting your security at the courtroom, with feeling comfortable in a courtroom with accessing the bench and all of these things that are already it wasn’t going to court for anybody can be intimidating. 

And so when I was in law school I wanted to make sure I felt as comfortable as possible and that I knew what accommodations, I needed, and was entitled to when I would go to court.  And so every Wednesday. I would sit in judge Garcia’s courtroom in Lansing, Michigan.  And he had invited at our law school orientation anybody to sit in and observe.  And so I decided to do that and I brought a couple new friends with me most of the time.  And we would sit and we would watch and observe the cases and learn about the different procedures, and gained some confidence in that environment. 

But for me, I was really practicing, in my mind, and then at home, navigating these situations years before I was in a courtroom. 

So, I can relate to Ryan going home and practicing opening these envelopes over and over again and just wanting to fit in at work, and not have disability become another thing that you have to explain when you’re working, and just also trying to get your work done at one of the law firms they worked at. 

I had a boss who, when they hired me they didn’t know a lot about, you know, me and my disability and my physical differences.  And I had on after I got the job I had a really honest conversation with them about the accommodations that I was entitled to.  And how I could still do the essential functions of the job but they didn’t handle all of it very well but I stayed at that job for a while.  And one of the things that was difficult was this attorney, really wanted the other attorneys to do things exactly the same way that he did. And as a disabled woman, and I know that there are times when you have to do things especially in the law that you have to do steps one through 20, and there’s no way to change those steps from being required and but there still may be ways that you can adapt, get the job done. 

In the same effectiveness level as your boss or your coworkers, but just in your unique way because the environment is inaccessible or discriminatory.  So one of the things that I had to deal with at this job was the employers wanted everyone to win meetings with clients sketch out this diagram.  And I knew that with my hand tremors that that was going to be difficult immediately.  And so one thing that I did was I went home and I had spent hours creating this diagram on the computer, so that instead of sketching it out. 

It could be printed with icons and charts and everything the same exact content as when you’re writing it in front of the client and explaining it to a client, but it’s a printed out resource so the client can also use and take with them if they’d like.  And we could use with other clients.  And I just remember when I first brought it up. I was really nervous about it, and I spent a lot of time working on it.  And to my employers credit he did allow me to use that and then you should have allowed me to use it and he did. 

He wasn’t doing me a favor by allowing me to make the environment accessible.  But at first he was like “Well I prefer if you can hand write it.” To do that, because then it shows the clients that you just know these things off the off the top of your head and as you’re writing out but they,  I guess think that you’re smarter, or something like, and but I pushed back against that and honestly, I stand by the diagram. I think the diagram’s great. 

And even though I don’t work for them anymore. I would do it all over again, and I still think the diagram was the right way to go. But I’m a little biased, probably on that.  But I’m also professionally equipped to assess that anyway.  So, back to the show Ryan is practicing opening now as mom says, “You don’t need to learn that and you said yes I do, because I don’t know how to do basic shape like open mail.” 

She’ll give you a break and you can both focus on pitching articles. And he says, I don’t think anyone will be interested in the time I ditch school to go mini golfing with my mom.  His mom goes. That was so fun, and he looks at her seriously with a smile on his face and, like, I know those corn dogs they sell they’re better than they need to be.  And so his mom kind of recommends that he should write about his CP. And he was like No, my whole life. My CP has been the main course, when it really needs to be an appetizer taken off the menu, and his mom says your disability is part of you. 

It’s what makes you any cuts and and so special, I know.  And so, one thing I don’t know if I touched on this before, but his memoir, Ryan O’Connell, who’s the actor and the writer and executive producer of the series, his memoirs called I’m special and other lies we tell ourselves. 

And so that’s kind of what this show is based on. And it’s the special term is something I talk a lot about on my disability advocacy work online because oftentimes the term special needs, is used by really well intentioned parents who want their children who have disabilities to be looked at as well rounded individuals who are in their words quote unquote more than just their disability, but that messaging can be very damaging.  And not only do other kids tend to use special and special needs. And the special buss or the short buss, or phrases like that to bully disabled kids.  But, disability, it teaches that disability is this kind of extraordinary strange experience of being other and different from the norm when really disability is the most normal human experience especially as we age and so we in the disability community. 

I tend to prefer people say, just disabled or disability, rather than special needs are special because it’s a weighted term that special word.  So in the show. Ryan returns to work sees a supervisor and says he has an idea about what he can write about but it’s really personal, and as supervisor cuts them off and starts apologizing and saying, I was like, essentially, really rude to you yesterday 

I was just told that you’re hit by a car, and as a fellow victim and then goes oh you were hit by a car too.  And the supervisor is like “No, but we all could be,” and starts kind of picking on the coworker Samantha who gets picked on by a lot of people.  And she says, “Especially Samantha. It all makes sense now the mail and your sad little limp.” 

And then goes oh no my lip is actually kind of and a supervisor custom audiences are you ever going to get better, or is this just like it for you.  And this question are you ever going to get better, or what’s wrong with you, or what happened, or things that I do get quite a bit from people, not just people who don’t know me. But you know, colleagues and old professors and things like that.  And it’s a difficult question one because it’s asking for personal private confidential, often medical information. 

And so sometimes when people are like, oh, what’s wrong with you.  I want to be like, what’s wrong with you.  Let me look at your medical records, and then I’ll discuss mine with you.  And just because I get asked that a lot especially if I’m using a mobility like a team.  And so anyway.  This question is really complicated when she’s like are you ever going to get better as it’s just like it for you because the disabled experience, is it just like, it’s not.  Are you stuck with this horrible disabled body and experience?  Coworker Kim says, “I hope you don’t mind [I told her] I couldn’t let her come down on you for something you couldn’t do.”  He says, “It’s fine.”  His supervisor says he needs to write about getting hit by a car, Ryan says, “Absolutely, let the healing begin.” LOL. Ryan sits back, looking at his computer, and smiles. 

That wraps up season one episode one of Special on Netflix!  Again, the new season comes out May 20th.  Watch along with me, and let me know what you think of the show!  This has been the Legally Abled Podcast, I’ll see you next time!”

The Vulnerables: Disability in a Pandemic

woman in wheelchair in kitchen
Photo by Marcus Aurelius on Pexels.com

By Ashley Jacobson, Esq., MA, CRC

Disability Rights Attorney, Advocate, Activist

Originally published May 3, 2020

Reviewed and re-published (because, well, it’s still as relevant as ever) on February 23, 2021.

The coronavirus, also known as COVID-19, has sunk its teeth in our daily routines, shaking up our normal practices and forcing us to grapple with its consequences.  In those discussions of the COVID-19’s impact, you’ve likely heard repeatedly that there are some people more at risk of contracting and experiencing severe symptoms of the virus.  Of those at risk, people with disabilities have often been seen and discussed as “vulnerables” not worthy of preservation, not worthy of mourning, not worthy of access, and not worthy of input.  As a physically-disabled disability advocate and attorney, I wanted to explain where that notion comes from, while further promoting that it’s not an accurate evaluation of the worthiness of the uniquely-abled (my invented joke phrase for people with disabilities, which more aptly describes our creative inventiveness and adaptability like super heroes, and is a nod to everyone pushing “differently abled” as a softer approach than just calling us what we want…disabled).

Though disability advocates have fought hard to receive equal treatment as citizens under several disability rights laws, the plight of those with disabilities is far from over.  It’s cemented in a well-documented battle throughout the history of humankind, which created a world built to exclude.  People with disabilities were isolated (google “Ugly Laws” when you’re looking for a real downer), killed, not trusted, malnourished, shamed, ridiculed, and not educated properly for centuries.

Most families have someone in their family tree who experienced this cruel level of stigma based on disability.  I’ve recently learned about a link to this historical discrimination in my own family.

In the 1940s, after barely surviving starvation under Nazi occupation in the Netherlands, my grandmother, her 11 siblings and 2 parents made the trip to the United States.  They suffered for years under the Nazi regime, and wanted to return to my great-grandmother’s home country–the US.  It took over a year after the end of World War 2 for my great-grandparents to get passports for all of the children.  They traveled to the U.S. as a family, but were torn apart when there was a problem with one of the children–Nilah, my grandmother’s sister–at Ellis Island.

Nilah had epilepsy and she was not allowed immediate acceptance into the States.

Many readers may know someone (or be someone) with Epilepsy.  If you’re familiar, you’re probably thinking “Why would Epilepsy be a problem when entering the U.S.?”  Well, today, it probably wouldn’t be.  But after WWII, among the medical community there was a false notion that Epilepsy was contagious, or hereditary, or just plain not what the forefathers would want in this country.  So, upon entering the U.S., my great-grandfather was allowed entrance with 11 of the children, including my grandmother, while my great-grandmother and Nilah were holed up in Ellis Island for months.  They were tested emotionally and physically in isolation, while my great-grandfather looked for work and cared for 11 children with $400 to his name, while living at my great-great grandmother’s home.

Shocking to no one today, Nilah was not contagious, and after several months was allowed to move with her mother to meet the rest of the family in Philadelphia.  But Nilah’s journey with disability wasn’t safe from danger.

Once settled in the U.S., Nilah was taken to a very well-known medical facility and my great-grandparents were told she should receive a lobotomy for her Epilepsy.

In my graduate studies in the disability rehabilitation counseling program at Michigan State University (HIGHLY RECOMMEND THIS PROGRAM), I watched in-depth videos and read about lobotomies.  You may have heard of these procedures, which historically damaged the brain using an “ice-pick”-like device (a great story on these linked below).

Though Epilepsy can be a very serious condition, the notion that it would become less serious by damaging Nilah’s brain with a lobotomy seemed unfathomable to my great-grandparents.  The day they turned down the lobotomy gave Nilah the chance to adapt in her own way to the world as a woman with a disability (though I wonder if she ever personally identified herself as part of the disability community or if it was just something she thought was unique to her).  Nilah went on to have a loving life and family of her own.

But Nilah’s lobotomy recommendation by that doctor still doesn’t sit right with me.  Instead of finding ways to healthily incorporate Nilah into the world, or importantly looking at alternatives first, doctors flippantly and far-too-quickly recommended an incredibly dangerous, serious procedure.

But Nilah’s story isn’t unique.  People with disabilities have been put in compromising, dangerous situations forever.  Into the 1970s, people with disabilities who were completely capable of inclusion in typical society were institutionalized–many in horrific environments resulting in abuse.  Willowbrook became infamous for such abuses including lack of nutrition, individuals living in cages, living in feces and human waste, lack of appropriate medical care, overcrowding, under-staffing, and under-valuing people with disabilities including those with Down Syndrome, Epilepsy, Depression, Post-partum Depression, symptoms now-indicating potential Autism diagnoses, and various other conditions fluctuating from mild to severe.

Many of the individuals in institutions like Willowbrook were capable of living among those without disabilities, but were sent to the institutions after their parents were given discriminatory guidance by medical professionals who expected and understood too little.  There was a lawsuit (linked below) which held that the individuals living in Willowbrook had their constitutional rights violated, and the major de-institutionalization movement began to emerge.  This movement led to major disability institutions “transitioning” its occupants into the community.

But de-institutionalization while valid in theory, was ill-equipped in practicality.  There were not sufficient community supports that provided safe housing, education, and jobs for individuals with disabilities who had been segregated from society for most of their lives.  From that point onward, many people with disabilities were forced to live on the street.  Many were put in situations that left them financially and physically vulnerable.  The perceptions of those without disabilities towards people with disabilities was incredibly damaging.  They saw people with disabilities as “dirty, homeless, beggars.”

Then, when wars added returned-soldiers with disabilities to the community, the number of homeless individuals with disabilities grew substantially.  Sitting on the street, with caps in their hands, begging for money and work–the term “handicapped” was popularized though derogatory in origin.

This societal view towards people with disabilities hasn’t caught up with the actual movement and progress spearheaded by those in the disability community.

Through repeated stigma, discrimination, and seclusion people with disabilities communicated their abilities, their willingness to work, their dreams for a more accessible and inclusive future.  Many have proven to be leaders in their communities, and yet, they are still viewed as “vulnerable” and “unworthy burdens” on our system.

This is why, when a pandemic hits, they are seen as less worthy of medical care.  When a “normally healthy” person and a person with a disability both are in the running for the last remaining ventilator, the “healthier” one receives it.  This is why people with disabilities were terrified of the orders coming from states indicating medical protocols deeming us less worthy of that same medical care.  Less worthy, despite being just as influential (if not more influential) as other contributors to our communities.  Less worthy, despite also being spouses, parents, and service-members.

In Michigan, Governor Whitmer participated in a disability teleconference this past week which I observed via Zoom (note, “observed”–because actual people with disabilities were not able to meaningfully participate in the discussion and instead agency leaders communicated what they believe the disability community needs during the coronavirus…but that’s to be discussed later).  In this discussion, Whitmer indicated that an executive order had been signed indicating people with disabilities as worthy of the same medical access and care as those without disabilities (new post in the works on this).  However, it became even more clear to me that the topics we discussed were necessary because stigmas and discrimination against those with disabilities have a long way to eradication.

People with disabilities are still seen as unworthy–still seen as acceptable deaths in a pandemic where many of these deaths could be avoided.  Protesters of my state, Michigan, were vocal about this.  It’s “only” the vulnerable individuals who will die, and they are likely to die anyway!   Coming from one of those “vulnerables” who serves her community day in and day out, I hear you, and you are wrong.  Most of us aren’t more likely to die earlier than you outside of a pandemic. We are more likely to manage health conditions, lack of access to healthcare, employment, and education.  But more likely to die, more worthy of dying? For most–nope.

However, I recognized that stigma the instant it radiated out of your hateful mouths into your megaphones.  It’s not new, its just more brazen.  And I’m here to tell you that the disability community is not going away.  In fact, we may even be more equipped to surviving the perils of this pandemic than you are.  We’ve historically been forced to live for long periods in isolation, on less money for performing the same work as you, with more barriers in our way built by those who dismissed our existence–yet, we’ve remained.

We are not just worthy.  We are just as worthy as you are.

Resources:

NPR story on lobotomies

NY ARC v. Rockefeller

“I Can and I Will:” accessibility on Fixer Upper

 

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For a family that consists of a person with a disability, accessible housing is often at the forefront of their minds but unattainable until their wallets catch up with their needs.  In a world that is still largely built for the typically able-bodied, it is challenging to find a house that is accessible.  When you can’t move freely around your home, can it really feel like a home?

A couple of weeks ago on the television show Fixer Upper, Chip and Joanna Gaines worked with the Tim Tebow Foundation to renovate a house for the Copp family.  The Copps have two young boys, Calan and Lawson, who use wheelchairs for mobility.  After Tim Tebow meets with Chip, the show catches steam with Chip, Joanna and Tim meeting the Copps at a baseball diamond.  I loved how the boys were shown playing baseball and being active.  So often when shows involve people with disabilities and it has a charity angle, they tend to make the people with disabilities look needy to garner sympathy for the people with disabilities and pride for the charity.  It was nice showing how empowered and able the boys are, as it showed them doing a typical but cherished childhood activity.  It also shows how with the right accessible technology and equipment, people with disabilities can do the same activities as the temporarily able-bodied.

As the episode goes on, Joanna shows the parents the mock-up of the renovations they want to complete for the house.  Some accessible aspects of the home: ADA accessible bathrooms with lowered sinks and mirrors that tilt so they can provide a lower angle for the sons who sit lower to the ground in their wheelchairs; a separate lower sink in the kitchen; a table that allows users of wheelchairs to pull right up to it height-wise; hallways wide enough to have wheelchairs pass through without it being too tight; ramps to get in and out of the house; posts and handrails that allow the boys to stand, move and play; and wheelchair-accessible van storage space.  The show also highlights an inspirational message in one of the rooms to encourage the boys to continue to grow (*hint* it’s in the title of this article).

This show really exposed the needs of a family that includes people who use wheelchairs.  I loved the overall feel of the show.  It was a feel-good episode for sure, but it had a very empowering angle.  Without giving away spoilers, the show ends with the boys receiving a remarkable backyard that allows them to use their space to their maximum ability and desire.  The show brings about an important issue though—a family that has a person with a disability has an unending amount of expenses.  Too often, people with disabilities are forced to “make it work” in an environment they were living in prior to acquiring a disability—even if that environment is unsuitable or completely unworkable.  A father who uses a wheelchair shouldn’t have to eat in the living room because the dining room table is too short/tall for his wheelchair to fit.  A person with a disability shouldn’t have to be carried around their own house when they have the independence through the use of assistive technology to move around on their own.  While the Tim Tebow Foundation did a wonderful thing in funding this renovation for the Copp family, the vast majority of families that have a person with a disability in them are forced to pay large amounts of money with or without insurance, even with assistance from government or other financial-assistance programs.

This is why accessible buildings, homes, and other structures must become the norm as opposed to the exception.  We must continue to advocate for accessibility, and for reasonable pricing for making a home, car, or other device/structure accessible.  Being able to navigate this world with a disability should not be considered a luxury—it is a right.  I for one am grateful for shows like Fixer Upper for showing this angle of living with a disability.

Thank you,

Ashley Jacobson, MA, CRC

legallyabled@gmail.com

For details on the show’s episode mentioned above, click below:

A detailed review of the Copp family’s episode