This is about developing disability pride and disability pride being a protest. This was originally published in July, 2022, updated in July 2024. You can listen to me read it by clicking the player below, or subscribing to my podcast on Spotify or iTunes. Patrons can download the pdf for this.

Become a Patron!

Disability Pride is a Protest

When you are continuously told by your culture, language, history, school, work and/or family that you need to fit your square pegged self into a round pegged world, need to conform, change, therapize essential aspects of who you are – shame is the consequence. You feel shame in all that you need to change, all that you seem to embody. You are representing the broken, the inept, the weak, the ugly, the mocked. 

To even hint of feeling pride over all the things you have been taught to feel shame over is a radical act. To feel proud that you can’t hear? Of your deafness? Proud of what, Down syndrome? Proud of being neurodivergent? Proud of whatever condition you have that sent you in for therapy or an IEP or IPE or funky medical gadgets that made you feel like a freak in the cafeteria?

To feel pride in any of that can see delusional or masochistic. 

And pride can also be a profound statement of protest. To claim, say or feel pride in all that we’ve felt shame over is a daring protest to the culture, language, history, school, work and/or family that told us we should feel that way about ourselves. It’s a fundamental refusal to buy-in to the shame anymore. It’s a call out to dig in even deeper: this is me; I am valid. I am worthy. Whether or not my culture, language, history, school, work, and/or family believe it, I have a right to be here.

Pride is radical. Pride is powerful. Pride is a protest. 

And like Laura Hershey said, we get proud by practicing. 

Some of us have spent a lifetime, decades, of trying to cover up our hearing aids, walk without a limp, mask our neurodivergence. Some of us have spent years in cubicles, offices, with people giving us treats to change the way we talk, move, express, or feel so that we can better conform within our culture. Some of us have already given in to all that we could to self-soothe, self-medicate, ease the raging internal pain – because nothing hurts so much as feeling so unwanted, broken, inept, ugly, mocked.

Feeling pride in those circumstances is monumental, an enormous reach, a leap of Everest-worthy proportions. How do you do it? How can it even be done?

We get proud by practicing- Laura Hershey

We get proud by trying. One step at a time. One piece at a time. Bit by bit. Little by little. Inch by inch. 

It’s a massive unlearning, a fundamental shift in our understanding of the world and our claim to space within it. 

Those of us with the decades of shame internalized within us, it’ll probably take a little more consciousness and practice. Which doesn’t mean that for those of you who are still coming up in the world it will be much easier – it may not, it may still require a great deal of conscious thought and practice to shift your internal compass and feelings about yourself.

But the first thing to do is to start with the awareness.

Learning to Run

"Why Bother?" She Asked

The Impact of Disability on Siblings: The Story of Dana & Meriah

Let Down syndrome Define You: A Letter to My Daughter

Tell Me Why

Why Frida Kahlo Remains Relevant

Choosing Moxie

The Influence of Disability Within My World

I Never Knew I Wanted a Child with Down syndrome Until I Had One

This post is about the best speech to text apps and is updated from a 2020 post. Affiliate links may be present - doesn't cost you more, helps keep this blog going and does not affect my rating of the product (- I use captions too; I'm not going to recommend junk for the sake of making a few pennies). 

This post is meant to serve as a resource for deaf or Deaf people (hearing impaired, hard of hearing) who need to understand what is being said. Some the side benefit of being helpful to hearing people who want to record information.

This is available in a downloadable PDF for my patrons, linked here.

It's also at the end of this post for people who benefit from access to PDF's.

Speech to Text Apps

Speech to text apps - or live captions, auto captions - are useful for pretty much everyone in some capacity. If you are hearing, they can record your notes, translate content, help with communication. For us hearing impaired in any capacity - deaf, Deaf, hard of hearing - they serve as a vital communication tool to help us  understand what people are saying. They take the speech (that others are saying) and put it into written form.

Some Pointers on the Apps Listed:

When possible, these apps are linked to the iOS (Apple) store. It is indicated in each app if it is available through Android.

All of the speech to text apps are FREE, but some of them require a subscription after a certain amount of trial has passed.

The apps that were created specifically to help us deaf in speech to text are listed first; the apps that were created by and for hearing and just incidentally help us deaf, are listed after.

All of the apps were installed on my phone and I tried then out before listing.

Speech to Text Apps Created for the Deaf/Hard of Hearing

Product Image

Product Name / Description

Price / Primary Button

Ava: Transcribe Voice to Text

Description:

Ava is an app designed to empower people who are deaf or hard-of-hearing by allowing to follow conversations in real time. The app provides 24/7 real-time captioning (with up to 95% accuracy, based on artificial intelligence), on your smartphone.

Free, with In-App Purchases

Check it Out

Sorenson BuzzCards

Description:

Type it. Show it. BuzzCards is an app designed to help deaf people communicate easily with people who don’t know sign language. The app works like a deck of flashcards. You type the message and show it to the person with whom you are communicating. You can write and save cards with the message.

Free

This was originally published on September 7, 2012. It's a personal post on strength, love and courage.

You can listen to me read this post by clicking the player below, or on my podcast on Spotify or iTunes.

Maya Angelou once said that courage is the most important virtue, because without it, we wouldn't be able to consistently practice the others. I've always agreed with that, because it can be hard to be kind. It can be hard to be forgiving, hard to summon the love sometimes.

In The Gifts of Imperfection, Brene Brown reminded us that the root of the word courage is cor - the Latin word for heart. I've thought about that a lot, about how courage is really something that goes deeper and beyond bravery, waving a sword around on a battlefield or something like that. Courage is heart-based. And heart based means it's central to who we fundamentally are, central to our physical and spiritual lives. You can live without your brain. You can't live without your heart.

Love, to me, seems like blood. It's the blood that keeps the system working. It's the energy behind movement, the Force from Star Wars, it's the link between the brain and heart, the connection between us all on the deepest level possible.

I've thought about this a lot, as choosing to keep my daughter after an amniocentesis revealed she would be coming with Down syndrome, was difficult. I am pro-choice, and I have disabilities: I know how hard it can be to navigate a world that wasn't built for you. I didn't know if choosing to bring her into the world was the right thing to do.

And I was scared.

I've been scared, so scared.

Scared to have her. Scared to mess up. Scared to make the wrong choices and alter someone else's life in radical, negative ways. Scared of not being able to hear, of my neurodivergence and how my disabilities might make parenting even more difficult. Scared of being unable to provide for my family. Scared of poverty. Scared of bad things happening to my child, to my children.

Lao Tzu said that being deeply loved by someone gives you strength, while loving someone deeply gives you courage.

The love that my kids have blessed me with has been the mojo - the moxie! - that I've sustained myself when I'm too tired, too weak, when my brain feels paralyzed or whatever I am going through. Their love quite literally, as Lao Tzu says, gives me strength.

My love for them comes from my heart, the source of courage.

It's an interesting thing to feel this subtle difference between the strength received from being loved by them, and the courage I am able to pull up through dint of my love for them.

Read more in my book, the first 4 Years with Moxie -

4 Years: Essays With a Little Moxie

$5

Meriah's essays from the first 4 years of living with Moxie: Down syndrome, disability, ableism and more. 142 pages of essays, original artwork and photographs. 

Buy Now

This was originally published on March 6, 2013 It is an account of the time that I was pregnant with Moxie. Please be aware this post discusses violence, sexual abuse and abortion.

You can listen to me read this post by clicking the player below, or on my podcast on Spotify or iTunes.

I.

The beginning of my pregnancy with Moxie feels jumbled, as I recollect it now, some 3 years later.

It’s a blur of happenings, events moving swiftly upon each other like quick waves that peak in a tsunami. The blur may be due to the events themselves or may be to the way my mind works – I am neurodivergent. I also rammed my head into the windshield of a car when I was 4 years old. Memories for me often shape themselves in unusual ways.

Like the day that we went to see our daughter for the first time.

I remember being in a black short dress with pirate sleeves that was from H&M, with black flared yoga pants. I liked that dress. I remember wanting to wear cherry red lipstick and not having any. I remember I wore my Earth moonboots and that Mikey didn’t like them. I remember that we passed a moss green Nissan Cube on the way there. I remember the weather was crisp, dry and clear. I think I was about 10 weeks pregnant. I know I was 36 years old (I just did the math). I also know that I was pregnant after just having had a second trimester miscarriage.

We were on our way to the special clinic, the one where they send “higher risk” pregnancies to be examined. Once there, in the dim room with the brightness of the ultrasound machine in front of us, my belly exposed with glistening gel slathered on, we saw the blinking of our baby’s heart, knew she was alive and for that, were happy. But we knew that the long pause and the lack of chatter from the technician signaled a problem.

She left, and returned with the very same perinatologist who had told me that my last child had died. My heart sank as I saw him and I blurted out something along the lines of, “but the baby is alive! I know it! I can see the heart beating!”

He nodded. Yes, our baby was alive but there were problems. He showed us the line of her skin and the line of her body: they were clearly separated. She had a condition called diffuse fetal hydrops, in which her skin was completely separated from her body, with fluid lying between the two. She had heart holes. She was unlikely to make it to term. “0%” chance of survival, he gave her.  He suggested that we have an amniocentesis before she died to find out the cause of the hydrops – not necessarily for her as she was clearly beyond saving, he said – but for future pregnancies.

Numb, and with aching hearts, we consented and returned a few weeks later for the test.

II.

The amniocentesis revealed the presence of an extra chromosome. It also revealed that the baby was a girl. And miraculously – her diffuse fetal hydrops had completely resolved itself.

Despite being strongly encouraged to terminate her life on account of the Down syndrome, we chose to keep her.

Perhaps I should be more honest here: my husband chose to keep her. My husband was adamant about keeping her, saying that we needed to “play with the cards we are given.”

Continuing in this vein of honesty, I am not sure I would have kept her, had I not been with him.

Having grown up deaf, with brain injury and with my auditory processing disorder – not to mention with scars all over my face, I know what it’s like to grow up with a disability. I know what it’s like to be excluded, mocked, and outcast. I know what it’s like to literally have stones thrown at you, because you are different, an “other”. I have a chip in my front tooth from a time that I fought back, but the (much larger) boy was wearing a ring when he punched me in the mouth.

I have been abused. I have been raped. And I am the norm in this: statistics clearly show that up to 90% of people with disabilities have been sexually abused,

This is a personal post that wraps up the first part, Almost 50

Listen to me read this by clicking the player below:

Almost 50, Part 2: Details

You know what bothers me about the post I just sent your way, “Almost 50”? It bothers me that I was talking about real things in a vague way. Time passing faster. Be here now. That stuff.

I want to add more detail to make those real statements less vague.

In 2022 a few things happened: I completed my second master’s degree, this one in counseling psychology, and was headed to the world of full time work (outside the house and for someone else) again. I had also realized that I am on the Autism spectrum myself, with ADHD. In 2022, I was ushering my oldest son in to high school (- can we just sit on that for minute?! HIGH SCHOOL!!!) with his 504 in place and was going through many of the 3am panic-wake-ups at the thought of my daughter entering middle school next year (- MIDDLE SCHOOL!!). In there, I was also trying to figure out what is going on with my youngest son, who is currently in speech therapy for his speech differences. I didn’t know if he’s hearing impaired or has an auditory processing disorder… or what? So there was that.

In between these things, my oldest son morphed into a REAL TEENAGER. I won’t get into the details but suffice to say that a month and a half were completely swallowed by all the things that were going on with him. Gulp. Swish. That time: Gone.

Meanwhile, I was in a job search, remember? On a large island with very limited opportunities. Ha.

While I love the private counseling that I do, and I love this blog and the freelance work, I have missed being a part of a team. I miss working with other people in real life, miss the human connection. I also miss economic stability and the greater financial security.

I don’t think that can happen now, though. I don’t think I can work outside the house in something full time.

That’s where I was vague in the ‘time passing faster’ and ‘be here now’. I see these kids of mine growing so fast, and needing me right here, right now. I need to drive them to this place or that, check in on this or that, organize something or other, and I have no idea how I would make that happen if I was working a regular full-time job.

Added to that, my neurodivergence and my hearing.

I’m trying to get a handle on the 4 million projects I take on, all the creative explosions that plop out of me. I’m trying to feel more grounded in this time-space reality that is moving so quickly and use my time here in a way that will help me become the person that I would like to be when I die. My hearing doesn’t help – focusing on what people say to me can be exhausting the listening fatigue is real. I don’t know if I can realistically handle that AND the full-time parenting that I do AND supporting my family.

I think turning 50 this year for me is about taking stock of the decisions that I need to make with the time that I have. What are my bottom-line priorities? What is my “prime directive”?

Knowing what I’m working with now – my ADHD/Autism –and hearing, it’s actually easier, because I can recognize what I’m doing and pull myself back. I can create systems for myself that are game changers. I LOVE getting older, knowing this. I LOVE knowing that the way my mind functions is perfectly fine, all of this has a reason and there are simple ways forward. This knowledge helps mitigate some of the absolute agony of ADHD and the fatigue I can feel when the hearing gets to be too much.

“Time passing faster” and “be here now” also applies to my love life. I think it would be nice to be in a relationship again. But I can’t do that with all the things that have been going on with my kids and my ADHD. I can’t focus on that many things at once, I’ll get derailed and it takes too long to get back on track. I worry about that sometimes, like,

I wanted this to be a personal post like hauʻoli makahiki hou - a year sum up - but in the end, the time to write it was as elusive as mercury. And so. This is mostly about time.

Click the player below to listen to me read this.

Time speeds up when we get older.

Remember that movie, “Groundhog Day”? Remember how he has to re-live the same day, over and over until he gets it completely right, and about three-quarters into the movie, they speed the movie up, cutting in between days to show the days are different from each other? And it feels so fast. But so much of the same.

Blink, another day went by.

Blink again, and it’s been a week.

That’s how time feels to me now – moving so swiftly that even as I reach out to try and contain it a little, slow it a smidge – it’s already gone. One moment, the next. Gone, with only the glimmering trails of the memories made in that twinkling space.

I’m 50 this year.

It’s a big number for me. The pain of being 50 when my brother Dana left this world at 44 hurts my heart. I can’t believe I’m turning 50 and he didn’t. I can’t believe I’m turning 50 and he isn’t here. I can’t believe I’m turning 50.

50 has so many layers.

I’m moving into this space in which time is passing so much faster, and the sum total of it moving forward will likely be less than I have behind me. I have less time here than I have spent. That’s fine with me – in no way am I scared of death. I’m not scared of aging either. But what I don’t understand well yet is my place in the world at this stage.

Being 50 means I’m moving into the elder space. What does that even mean now? And what does it mean, when I live in a mainstream culture that values youth so much? What do I DO with any of the wisdom I might have gleaned over the slower years that I have passed through already?

I have so many questions, and maybe it’s here that again, I miss my brother so much. He was the one I asked these kinds of questions to, my safe space to talk.

And he had those questions as well.

Who are we at 50? Who are we as we age?

Are we becoming the people we want to be?

Am I?

I look at myself in the mirror sometimes and I don’t recognize myself.

Sometimes it’s because I look so much older – wow! That’s really me?! I look like a middle-aged mom!

Oh, but I am a middle-aged mom! Haha – it makes me laugh

Sometimes it’s because I look like I’m 12 and it takes me a minute to place that girl with who I now am.

Sometimes I love the way I look at this age. I love that I am developing some arm muscles!

Sometimes I feel sad and despair of being squashed between my feelings and this youth-driven culture. Am I so desiccated? Will my physical form be desirable at all? Is it all downhill from here?

I look around for women to admire, someone famous who looks her age, who is my age or older, who has the sauce, smarts, kindness, and integrity that I admire. Those women are hard to find. I have a short list going – Tracee Ellis Ross, Jamie Lee Curtis, Michelle Obama (does she even count though? She’s more of a demi-goddess, isn’t she?). Viola Davis. Michelle Yeoh. Alanis Morissette.

I guess I yearn for some sort of guide as I enter this new decade, this decade which feels more like a portal to a different time-space reality in my life.

Almost 50

Now, more than ever, I realize that no one is going to save me. No one is going to discover me. No one will give me permission. If I’m going to go wherever it is that I want to go in this life, I better get going with that path, because it won’t make itself. It’s a sobering, scary thought, but also liberating, isn’t it? I mean, we really don’t need to wait for any of those things. We thought we did though. We waited a long time for them. But we didn’t need to.

I’m saying “we” because I really think it’s a bunch of us in this boat. We were brought up to ask permission for all things,

This is Micah Nichols' inaugural blog post, an interview with author Melissa Hart on her book, "Daisy Wormwood Changes the World."

You can listen to this interview via the "Unpacking Disability with Meriah Nichols" podcast, below, or on Spotify or Apple iTunes.

Melissa Hart wrote a book geared for teens:

Daisy Woodworm Changes the World

$14.99

Thirteen-year-old Daisy Woodward loves insects, running track, and hanging out with her older brother, Sorrel, who has Down syndrome and adores men’s fashion. When her social studies teacher assigns each student a project to change the world for the better along with an oral report, Daisy fears the class bully—who calls her Woodworm— will make fun of her lisp. Still, she decides to help Sorrel fulfill his dream of becoming a YouTube fashion celebrity despite their parents’ refusal to allow him on social media.With the help of her best friend Poppy, and Miguel—the most popular boy in school and her former enemy—Daisy launches Sorrel’s publicity campaign. But catastrophe strikes when her parents discover him online along with hateful comments from a cyberbully. If Daisy has any hope of changing the world, she’ll have to regain her family’s trust and face her fears of public speaking to find her own unique and powerful voice.Daisy Woodworm Changes the World includes an author's note and additional resources.

Buy Now

We earn a commission if you make a purchase, at no additional cost to you.

01/26/2023 12:17 am GMT

Because this book was geared for teens and features a girl whose sibling has Down syndrome, Micah took the reins - who better to review the book and interview the author than someone who is also a teen, and whose sibling also has Down syndrome?

Daisy Woodworm Changes the World

This was Micah's first interview!

He really gets rolling with Melissa about mid-point, they get deeper into subjects like youth changing the world, the accomplishments of people with Down syndrome, how Melissa gets into some indirect advocacy in her book...and more. They had a blast talking with each other.

And you can enjoy watching, hearing or reading their interview here!

https://youtu.be/BGdxJzc8GAY?t=69

Micah and Melissa

Interview Transcript

Transcript, Micah’s Interview with Melissa Hart, Author of “Daisy Wormwood Changes the World”

___________________________________________

Okay.

Okay. Okay.

Melissa: 

Hi, there, how's it going? Micah?

Micah:

Oh, pretty good.

Melissa

I love black Cats.

Micah:

Yeah, Ik(k)i’s great

Melissa:

I've heard that they're always the last to get adopted at shelters.

Because they don't photograph well, in photos, you know, advertising, this could be your cat.

All you can see are the eyes right.

Micah:

Yeah I've actually had a bit of problems with that.

I like to take pictures of them, and uh, he had a cousin, and I took a couple of pictures of his cousins, and they - those were really good. I liked it.

Melissa:

Yeah, I wonder if you've photographed against a white, background. Then the black cat would stand out right

Micah:

We have, like screens here. So when they were walking by the screen.

Melissa:

Uh-huh.

Micah:

Like the screens are weird, like they catch the light when they show up so like when I took the picture looks like. It was sort of like a weird lit background.

And also or sort of fluoresces and stuff

Melissa:

Oh, I love that! That's great huh!

Micah:

Yeah, really cool. 

Melissa:

Well, feel free to ask me. Anything.

I'll answer anything.

Micah:

Okay, yeah, that might actually be a good way to start, yeah, so, how much of the book is based on your personal...

This is a review of the book, "Year of the Tiger: An Activist's Life," by Alice Wong. You can listen to me read this post by clicking the player below this, or on my podcast on Spotify or iTunes.

Year of the Tiger: An Activist's Life

Sometimes I feel like any memoir written even a little decently and capturing a piece of the disability experience is poised to become a bestseller. Not necessarily because it deserves to be – not because it really brings us to a new place or takes us where our mind explodes in an element of new awesomeness. They just become bestsellers because of woke box-checking. 

Alice Wong’s “Year of the Tiger” is a whole different cat. It BELONGS on the bestseller list. Oprah needs to pick this book up it needs to be required reading for all those diversity and disability college courses. 

Why? 

Glad you asked. First, here’s the trajectory of Instagram updates that I posted as I was reading it:

https://youtu.be/GOTItJT-Fek

You’ll probably noticed that my tone changed after I started really reading Year of the Tiger, right?

I got pretty serious, pretty fast. I went from masking/smiley/happy, “oh cool, my friend wrote a book and this is awesome!” to, not smiley or masking at all – not even caring that my selfie angles were completely unflattering because I just wanted to get that message out that “this book is phenomenal and you better pay attention.” 

That is how good this book is. 

So, again, why?

Why is Year of the Tiger so good?

Out of all the books available in the world right now, why should you reach for this one?

Here’s why:

Alice is a really good writer who knows her shit

In a world that doesn’t take disability seriously when it should, and way too seriously when it doesn’t need to, Alice consistently hits the right notes and explains the pieces that matter. She’s your buddy who always says the perfect thing, who knows how to twirl a sentence out so it can cast the messages, sinking them deep while you laugh, cry, or get pissed off.

But she’s also a storyteller. 

Year of the Tiger isn’t all disability stuff; it’s also about being a Chinese immigrant in Indiana, it’s about culture, family, connections, community. It’s about choices and chances in life. 

These intersections speak to Alice’s life, but they echo through all of us, they are relatable because we all have our intersections and if we are lucky, they can help ground and support us. Alice seems to be lucky in hers, and it’s a beautiful story.

Alice is playful, snarky, and fun

On the heels of good writing comes a good time, and Alice definitely enjoys a good time. She has games, puzzles, drawings, and photos woven into her stories. Her descriptions of all that good food left me drooling. 

Because disability justice and advocacy can be so painful, I appreciate her playful approach to handling some Big Subjects – playful, but she still handles them. She doesn’t shirk the hard stuff that we really need to talk about.

And of course, I love her use of curse words :)

Alice has vision and leads by example

Her strength of vision comes through clear and strong in this, her first memoir. She is a powerful visualizer, seeing the world as it is – with rampant ableism, oppression, and inequities. She sees the world as it should be, in the Star Trek model (and even beyond!) but in her striving to bridge the present with the future, she somehow remarkably and miraculously manages to refrain from falling into vats of bitterness, despair or anger. She remains playful, spirited, a calm force of connection.

I want to talk about that calm because it inspires me (in the best sense of that loaded word). 

My brain is in a perpetual rush, trying to Do All The Things and getting super excited about each new project or whatever. Alice shows me through her writing how possible it is – how necessary even – to take time to get things done right. How important access is,

This is a comprehensive post about Medicare. It covers: What is Medicare? What Are the Parts of Medicare? Detailed Explanations on the Parts of Medicare? Who Can Get Medicare and way more - please refer to the table below with links to jump directly to the part you are looking for guidance on.

Kathleen Downes wrote this post. She knows a whole lot about Medicare but she does not work for Medicare. Take what's offered here as friendly advice and do your own investigation too!

You can listen to Kathleen read this by clicking below, or subscribing to the podcast at the end of this post.

What is Medicare?

Medicare is a U.S. government-run health insurance program for qualified workers age 65+ and some people with disabilities. It is run by the federal government or the government for our whole country.

The money that pays for Medicare comes from 2 trust funds held by the U.S. government (Medicare 2021).

The first fund, the Hospital Insurance fund, pays for Part A costs such as inpatient hospital stays, limited home health services, and limited stays in skilled nursing facilities. I will talk more about the parts of Medicaid later (Medicare 2021).

The money from the hospital insurance fund comes from:

Payroll taxes

Income taxes on Social Security retirement benefits

Interest on trust fund investments

Premiums, or monthly payments, from people who don’t get Part A for free (2021).

The second trust fund is called the Supplementary Medical Insurance fund. It pays for Part B costs such as outpatient care (services that are not overnight hospital care). It also pays for Part D care (prescription medicine).

The money for this fund comes from:

monthly premiums

interest earned on trust fund investments.

Typically, everyone enrolled in Part B and/or D pays a premium (Medicare 2021).

 What are the Parts of Medicare?

Medicare has 4 parts, each represented by letters.

Part A: Inpatient hospital care and some limited home health care, limited nursing home care

Part B: Outpatient care such as doctor’s visits and some limited home health care

Part C: Is also called an advantage plan (MA plan), which allows the government to contract with a private company to deliver Medicare benefits.

Part D: Prescription drug coverage (Bunis 2021).

You can receive Part D benefits in two ways:

 A separate drug plan

An MA “Part C” plan that includes drug coverage

You have to have Parts A & B to join an MA plan or a separate drug plan. Not all MA plans cover prescription medications (Medicare 2021b).

 What is Meant by Part C vs. Original Medicare?

Original Medicare is the traditional way to receive benefits. The government pays a provider directly for services in Parts A and B (Center for Medicare Rights 2021). Most Americans use Original Medicare and most providers accept it.

The other choice is to package benefits together with a Medicare Advantage Plan (MA) which is also called Part C.

You can think of an MA plan (Part C) as a way to combine the parts of Medicare into one plan (Bunis 2020).

Those in an advantage plan still receive the services in Part A & Part B, but may be offered additional services not covered by regular Medicare such as dental benefits (Center for Medicare Rights 2021).

You can also get Part D, drug coverage, through an MA plan, or as a separate benefit (Center for Medicare Rights 2021). Not all Medicare Advantage plans cover drugs. 

Most Medicare Advantage plans do have drug coverage, but you might be allowed to join a standalone drug plan if your MA plan does not cover drugs. You cannot join a standalone drug plan if your MA plan already offers prescription coverage (EHealth 2021).

If you have an MA plan, you still pay a premium for Part B (and Part A if you don’t get it for free).

 The MA plans have to place a limit on out-of-pocket costs for A & B (Center for Medicare Rights 2021).

Every MA plan is different.

This is a discussion essay on disability pride, models of disability, sparkle sauce and glitter juice.

Why Do We Need to Feel Disability Pride?

Why do we need to feel disability pride at all? Doesn’t that feel slightly masochistic, feeling pride in something that has given us grief in our life? Feel pride over something that essentially “isn’t working” from a mainstream cultural perspective. As a friend said on Facebook, “isn’t it enough that I accept it? Why do I need to feel pride over it?”

“Isn’t it enough that I accept it? Why do I need to feel pride over it?”

Brene Brown wrote in Atlas of The Heart that pride is a feeling of pleasure or celebration related to our accomplishments or efforts. This is authentic pride, it’s positive and can be felt for ourselves and/or others. “I can feel proud of myself, proud of you, proud of us.”

Pride is an emotional response or attitude to something with an intimate connection to oneself, due to its perceived value. Oxford defines it as "the quality of having an excessively high opinion of oneself or one's own importance." Wikipedia

Hubris, on the other hand, is “an inflated sense of one’s own innate abilities that is tied more to the need for dominance than to actual accomplishments.” It’s the negative piece that usually flavors the word, “pride,” and is not actually part of pride at all.

To me, there are two things going on with using “pride” in connection with disability: there is the definition of pride itself and the negative taste it can leave in our mouths. And there is the confusion over feeling like we must feel pride over something that may have simply been something difficult for us in our lives. 

The Feelings Associated with Disability

The feelings that we tend to feel growing up with disabilities are shame (feeling flawed, unworthy of love, belonging, connection), guilt (feelings of what we’ve done or failed to do, putting others out, been an inconvenience), humiliation (feeling belittled and put down), and embarrassment (feeling that we’ve done something that has made us uncomfortable, but is a fleeting and relatable experience). 

These feelings plug in to the medical model of disability (that disability needs to be fixed), and they make perfect sense when viewed through that lens. 

We feel guilt our families have to go out of their ways to accommodate us, guilt that everyone in our class must wait, bored, while the teacher tries to figure out how to enable the closed captions in our Zoom session. We feel shame in who we are when we see ourselves through the lens of the medical model, that we need to be fixed, made “well”, that our edges of our square pegs need to be shaved off to fit in the round holes of the world. 

Read: Square Pegs in a Round Peg World

The power of the neurodiverse

The Social Model of Disability

The social model of disability, however, sees disability as a natural and normal part of the human experience. From the social model of disability, it’s the culture that we live in that’s the problem, and culture can be changed. Culture is a living expression, it’s fluid, it can transform. Shaving off our square pegs to fit in the round holes of the world, a’la Medical Model of Disability, is a travesty from the viewpoint of the Social Model of Disability, as it removes all juju, the mojo, the good sauce that disability brings with it. It’s like a giant vacuum cleaner hose, sucking up the glitter that also makes up disability.

And make no mistake about it: there IS glitter in disability. There’s sparkle-sauce and awesomeness in the world of disability. Whether or not mainstream culture recognizes it, almost everything that is deeply cool in the world came from someone with a disability. Think about it: we’re the ones who push outside the round pegs of the world – we push past the given consciousness.