Happy September! I don’t know about you, but I’ve never been more excited for fall and blanket weather.

The disability tax, in short, is the added cost disabled people have to pay in order to survive and meet their day-to-day needs. To quote Reddit, it’s “a conceptual term for the extra everyday costs disabled individuals face to live an equal daily life.” Insurance doesn’t cover everything (or anything in some cases), disability payments and SSI are not enough to even cover rent in most states, and hasn’t increased in decades (despite haters proclaiming disabled people are mooching off the system and raking in the dough).

A recent reel on Instagram by Sarah Todd Hammer got me thinking about all of the added costs I’ve had throughout my life as a disabled person. Some of them are for survival and some of them are for thriving and my mental health. All are equally as important.

Sarah did a reel of her total monthly costs but I’m going to do a more broad overview.

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These are all the things I’ve had to pay extra for because of my disability (disclaimer that I recognize that some of these things non-disabled people do or have to do too):

• Water aerobics classes

• Physical therapy

• 1st floor apartments (yes, somehow companies and landlords can legally charge more for these)

• Grabbers to pick things up

• Mobility aids

• Food delivery when I’m too tired or in too much pain to go to the store

• Therapy (of the mental health variety)

• Toilet seat adapters (to make them higher)

• Yearly neurology appointments

• Pain aids and medicines of all varieties

• Rubber grippers to be able to open jars, bottles, etc.

• Lift chair

• Staying in hotels so I can go into work since I’m not able to drive myself in

Then there are the non-monetary things we all have to pay for with our physical and mental well-being: inaccessible spaces, discrimination at work, asinine things people say to us, pandemics, lack of sufficient health care access, government funding cuts, discrimination in health care, lack of representation, difficulty dating or finding friendships, time, planning…the list goes on and on.

I’m fortunate that I don’t have too many added costs in my day-to-day. This was an interesting exercise to do though because I function on auto-pilot so often that I’ve never sat down to think about all of the things I’ve needed or bought over the years that allow me to get through the day-to-day.

What are some of your “disability tax” items?

☮️❤️

The older I get, the more I fear getting older. I know that aging is a privilege and something not everyone gets to do, but aging is also a privilege meant for the non-disabled. Mind you, everyone will likely experience being disabled in one form or another in their lives—a fact that only increases the older you get. My very healthy, very spry grandmother was in a wheelchair by the time she was in her 90s.

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Dearest Gentle Reader,

Sorry, I’ve always wanted to do that. Shoutout to my fellow Bridgerton fans. My apologies for the lack of posts the last couple of weeks. They’ve been busy and I was struggling with some writers block.

Last weekend, I was lucky enough to be able to venture up to LA (Los Angeles) with some friends. If you know me, you know I’m an LA stan even though I don’t make it up there very often because I’m not able to drive that far.

We were going for a free Star Party at the Griffith Observatory, but had dinner plans first. Things started off really well. We were able to park in the single disabled parking stall the restaurant had in front. My friend made reservations to sit outside to stay in line with my COVID safe-ness, but I had only done a quick glance at the photos and description when she sent us all the link to see if we’d like it. When we got to the host stand, we noticed that a lot of the outdoor seating was up a couple of steps. The host asked if I needed my walker with me and I hesitantly said “yes”. After that, I was told that my walker wouldn’t be allowed up on the terraced seating because of safety issues so I could either eat inside or sit outside without my walker. Since I had my friends with me, I opted to stay outside.

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We ended up having a really nice dinner and had a really nice couple sitting next to us. In the moment and even looking back, I felt like I was supposed to be more angry about the way they handled my walker though. I was reminded of stories from Instagram of wheelchair users who are told they can’t come into certain bars or places of business because their chair is a “fire hazard”. It seemed like that’s exactly how my walker was being seen too.

I think I was committed to having a nice time and was so happy to be in LA, that it didn’t get to me that much (the steps you had to go up to get to the bathroom were a real annoyance though). As disabled people, we’re so often forced to pick our battles. If we got angry over every single instance of lack of accessibility (even if it’s absolutely justified), I think a lot of us wouldn’t leave the house or would just be in a perpetual state of anger. For me, the challenges I face with accessibility often do lead me to just want to stay home. It can be so incredibly hard to go out and do things that non-disabled people take for granted.

I still want that restaurant to do better and had I not been with my friends, I likely would have raised a much bigger fuss. That’s a whole different level of the accessibility issue too. Lack of accessibility means that disabled people don’t often get the privilege of going out and doing things totally alone because we’re met with so many obstacles to it. I wouldn’t have been able to eat at that restaurant without my friends because I wouldn’t have been able to get up and down the couple of steps without their help. There’s absolutely nothing wrong with asking for or needing help, but everyone deserves the option of going somewhere without having to ask for help or need it because of lack of accessibility.

We never made it to the Star Party at the Observatory because it was absolutely packed and there was zero accessible parking available (the non-accessible parking is on a giant hill up the mountain). But in the long line of cars to get up there, we still got to see sunset over the city which was absolutely beautiful.

It ended up being a really great night with friends in one of my favorite cities. It was a lot of in and out and having to get Red, my walker in and out too. I wouldn’t have been able to do it all on my own, that’s for sure. I was out past 11pm for the first time in quite a while too.

I definitely felt it the next couple of days, and even a little bit now. It was worth it, but I was in a lot of pain and very tired. It’s so hard to figure out what my body might regain or what it’s just not capable of anymore. One of the side effects of my osteoporosis medicine is also muscle pain, so I’m not sure how much of it is triggered by those meds, or is just caused by aging. I often long for the social life I used to have pre-COVID, but I’m not sure I would physically be able to manage it anymore anyway, especially if I didn’t work from home.

I’m super grateful for the experience but I can’t help but think of how much better it might have been, had those accessibility road blocks not come up.

In honor of a true global treasure that we lost this past week, I’ll leave you with this. RIP Dolly 🩷

☮️❤️

Disability and Determination is a weekly newsletter about my experience navigating life with a rare disability. If you like this post, feel free to give a click on the ❤️ symbol below. This will help me get discovered by others on Substack. To be notified of future posts, drop your email in the field at the bottom and click the Subscribe button. If you’d like to further contribute, I also offer a paid subscription option (that includes extra monthly content), or you can Buy Me a Coffee ☕ I’m glad you’re here ☺️

Disability exists on a spectrum. Even in the same family of disability, oftentimes no two people’s disability looks exactly the same. I’ve met a handful of people who share the same type of muscular dystrophy that I have and we have a lot of things in common, but there are definitely some differences in how our disabilities manifest themselves in us.

The thing that I think a lot of people don’t understand is that the day-to-day experience with our disabilities is often on a spectrum too. One day we might have considerably less pain. One day we might have considerably more. One day our energy tank might be pretty full. The next day it might be nearly empty.

I have days when I need my walker more than others. Sometimes I take it with me everywhere, and sometimes I only use it for longer walks or if I’m feeling shaky or weak that day. It’s also tricky for me to get it in and out of my car, so that’s something I have to weigh too.

Some days I might be able to walk more steps than others. Some days I barely have the strength to lift myself off of the couch. Some days I might have energy to go out and do things with friends, and some days I might not (which is much more common in the summer when it’s super hot and my body kind of shuts down). Some days I might not have a lot of pain at all, and others I might have to take medication or rest in bed.

I think there have been times when people have seen me using my walker all day, then not as much the next day, and that automatically becomes “oh, she must be faking it” or “she doesn’t really need that walker.” I know people who use a wheelchair but also have the ability to stand up or even walk a little often face this same scrutiny.

People often think disability only looks one way which can lead to the assumption that we’re all supposed to be using our mobility aids all the time too. We’re expected to have one level of strength or physical weakness all the time—it’s never supposed to fluctuate. If we need a wheelchair, then certainly we’re not able to walk at all. If we have a walker, then we must need to use it 24/7 right?

Wrong. It’s these assumptions that lead people to the next wrong assumption: that if you don’t fit into the aforementioned box or you’re not disabled in the way people think you’re “supposed” to be, then certainly you must be faking it. You’re making up this condition so you can get those thousands and thousands of dollars from the government and not have to work (*ahem* sarcasm). You’re using your mobility aid to garner sympathy or to get “special treatment.”

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So many of these incorrect assumptions could be remedied if people just accepted and understood that a) two things can be true, and b) nearly everything in life exists on a spectrum. Are you happy every single day? Do you have days where you’re really on top of it at work and others where you’re just tired and can’t seem to shake the brain fog? Are there times when you have the energy to do something and times you don’t? Do you always feel 100%, exactly the same every single day of your life? If you do, then you might want to see a doctor because it sounds like you might be a robot.

Disability doesn’t just look one way and it doesn’t present itself in people with disabilities in just one way either. Our day-to-day experience fluctuates when it comes to our strength levels, pain levels, energy levels, and about a hundred other things. So before you start making assumptions, maybe take a step back and look at how your life and experience fluctuates from day-to-day too. It may not look the same as a disabled person’s experience, but I guarantee you will find that you’re not always “one way” either.

And to anyone who has ever thought I was faking it or using my disability and mobility aids as an excuse or to get “special treatment” (or any other asinine assumption)✌️

Happy August!

One of the things I learned from meditation practice is that our brains are wired to look for the negative. In the early days of humanity—and even now— it’s something we’ve had to rely on for survival.

Before I knew that, I thought there was something “wrong” with me because I always seemed to focus on the negative. In my defense, when you’re living with a disability, you experience a lot of negative things too so it’s understandable you start to look for that after a while. It was a relief to know it’s just the way most of us are wired though.

That doesn’t mean we can’t do anything about it though. I’m living proof that you can. It’s definitely not easy. When your brain has been programmed one way from birth, it takes practice and sometimes even therapy to help shift your focus.

There are few methods I’ve tried over the years that have helped:

1. Gratitude practice: Whether this is meditation or journaling about the things you’re grateful for, or both, this is a great way to start to shift your perspective to focus on what you have instead of what you don’t.

2. Kindness log: This is a more recent one I’ve been doing. When someone does something kind for me or someone else, I log it in my Notes app on my phone with the date. I’ve already racked up quite a few incidents after only a month of doing it. I can keep referring back to it anytime I start to feel my faith in humanity slipping. There’s nothing too big or too small to go into it. I went and got coffee one morning and as I was waiting for my drink, I watched how many people were holding the door for others, including myself. That went right into the log.

3. Writing down good or meaningful things that happen throughout the year: Fold them up and put them in a jar, and at the end of the year, go back and read all of the little pieces of paper. I learned this exercise from my fellow Substack writer Amy.

4. When something bad happens, try to find what might be good or an opportunity in the experience: This is much easier said than done. If we get in a car accident or lose our job, those are very serious and life altering things. Sometimes we may not see the good or the opportunity until much later. I’ve been in 4 car accidents in my life (none of which were my fault), and I also got laid off from a job in my early career. I can look back now and recognize that I wouldn’t have my car that I love or be so well versed in dealing with car insurance companies had I not had all of those accidents. Losing my job left some permanent scars too, but it really helped me learn how to seriously budget and gave me a chance to clear my head. Plus I ended up getting a new job that was a much better fit as a result. This was a good place to start for me because even if we’re retroactively trying to find things we can appreciate about crappy events in our lives, the more we practice this, the easier it can get to do it our day-to-day. Also, there are just some things that we won’t be able to find the good or opportunity it, and that’s ok too.

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These are all tools I’ve found helpful. Hopefully they’ll help you too but I understand it’s not a one size fits all scenario. And in no way do I think we all need to be running around spouting sunshine and rainbows. There’s positivity, opportunity and appreciation and then there’s flat out toxic positivity. Toxic positivity is more of a societal expectation that puts more pressure on us if we don’t respond or feel a certain way to things. It also invalidates our feelings which isn’t helpful for anyone. Sometimes a bad day is a bad day and a bad experience, is a bad experience and it’s ok to just say “this sucks” and not try to shift your perspective. My fellow writer Chris has a great post on that very topic.

Practicing and working to get your mind to focus more on the positive should be something helpful in your life. It should enhance things, not add more pressure or be another to-do list item. In times like these where we’re constantly surrounded by or dealing with some incredibly heavy stuff, it really helps to try find some joy wherever you can, especially in your day-to-day life. If you can at least have a little more ease there, that can make a big difference.

Are there any tools or exercises you’ve found that have helped you not automatically focus on the negative?

I’m taking a break from new writing for a little bit, so for the next few weeks I’ll be sharing some of my greatest hits.

Disability and Determination is a weekly newsletter about my experience navigating life with a rare disability. If you like this post, feel free to give a click on the ❤️ symbol below. This will help me get discovered by others on Substack. To be notified of future posts, drop your email in the field at the bottom and click the Subscribe button. If you’d like to further contribute, I also offer a paid subscription option (that includes extra monthly content), or you can Buy Me a Coffee ☕ I’m glad you’re here ☺️

We are once again in July which means one thing…it’s Disability Pride Month!

If you don’t know what Disability Pride Month is or why it was created, I encourage you to Google it, find some books at your local library, and also watch Crip Camp on Netflix.

Instead of sharing my musings on this particular topic, I wanted to share some of my favorite Substacks from the month so far:

Wheelchair, Bound

What is Disability Pride to the Formerly Able?

I meant to write something last week but we were coming out of a major heat dome and I just couldn’t get it together. It got up to 100 degrees F here in Massachusetts, and there were days when it was hotter here than in New Orleans or the southern California desert. (I have stepdaughters in both locations, so I know this is true…

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2 months ago · 20 likes · 9 comments · Emily Wojcik

The View From Down Here

We need Pride because disabled people are still made to feel ashamed

Hello, This week, I’ve seen a few of those predictable “how can you be proud to be disabled?” and “what the hell is Disability Pride Month?” posts, as I do every year. These questions are deliberately boneheaded, obviously, and I have no intention of addressing them…

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2 months ago · 48 likes · 3 comments · Lucy Webster

Rolling With It

A Story About Searching for Disabled Freedom

Image Description: A quote from President Franklin Delano Roosevelt engraved in stone from the FDR Memorial in Washington, DC, that reads: “We must scrupulously guard the civil rights and civil liberties of all citizens, whatever their background. We must remember that any oppression, any injustice, any hatred is a wed…

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2 months ago · 23 likes · 3 comments · Kelly Mack

📝 Notes from an MS Lifer

Dog Days Are Over?

I need to preface what I’m about to say by confirming that I love dogs. Some of my best friends have the most adorable dogs. In fact, as the above photo shows, I have been a dog owner myself. There I am, aged around 10 with my arms draped lovingly around my young pup, Jason…

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a year ago · 24 likes · 27 comments · Jane Harrison

There have been some cities in my state too that have been displaying the Disability Pride flag (seen in the header image on this post) and doing some other amazing things to bring awareness to the month and to the importance of inclusivity and accessibility.

Happy Disability Pride month and wherever you are, I hope you’re staying cool and dry cause it’s rough out there right now.

I’ll leave you with a meme I created for my dog, Rogy’s Instagram:

Well that’s quite a Substack title, isn’t it?

Aside from my physical disability, I’ve had a slew of random medical occurrences in my lifetime. This year though, I had what was probably the scariest one. I won’t go into all the details, but after multiple medical visits I ended up needing an MRI to rule out a brain tumor.

Every time I type it or say it, it never feels any less surreal. I always assume the worst when it comes to medical stuff but this time, I genuinely never would have expected a brain tumor. I didn’t take it that seriously when my doctor told me it was a possibility either, but when a specialist looked at my medical record and ordered an MRI of my brain, the anxiety set in.

Trying to then get an MRI was an obstacle all on its own. Thankfully I just kept checking the schedule and was able to snag a last minute cancellation which meant I was able to get it done much sooner. Even better, it was on a weekend when nothing else was open and I didn’t have to take any time off or work.

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The actual MRI itself wasn’t bad. I hadn’t had one for a long time but I was worried I had become claustrophobic in my old age. I also didn’t love not being able to wear a mask but my appointment was right after lunch when no one else had been in the machine for a while. The circumstances of this whole thing really lined up in the best way possible. The nurse and tech were super nice. They gave me a warm blanket, ear plugs and headphones that played calming music so I just shut my eyes and meditated for most of it. I had to have it with contrast which means they inject you with this fluid and my veins being my veins, it had to go in my hand. Not ideal, but it didn’t hurt for too long. Both women were able to help me get up off the table too. The whole thing lasted almost an hour but I felt so much better after. Happy to report, I am not that claustrophobic still.

After that came an over 2 week wait for the results. I don’t think 2 weeks has ever felt longer. It was a total roller coaster. One day I would feel ok, the next day I would be on edge and anxious. I managed to stay in the present pretty well all things considered. It was weird though when I would have a thought about something in the future and I would stop myself because I wasn’t sure if I was even going to have a future.

When I hadn’t heard anything after two weeks, I sent my doctor a message. She replied almost immediately with a very long message, the main point of which was that I didn’t have a brain tumor. I felt relief right away but the full load didn’t feel like it was taken off my shoulders for a couple of days. It had been on my mind (pun not intended) for what felt like so long, I had to remind myself that it was actually ok.

The whole experience made me take a step back and reevaluate my life a little bit too. What can I do to increase my happiness? My friend Sandra’s series on this is a great tool for that. What do I want to do that I keep putting off? What kind of changes do I need to make?

I didn’t want to add any extra pressure to myself, but I hadn’t been feeling very happy or content before all this happened, so it pushed me to start really looking at things again.

I don’t have all the answers yet, but one answer I do have is just have the dessert. Life is too short to deprive ourselves of every little thing. If you have an allergy or a health issue, that’s the one thing. If there’s anything I’ve learned these past 40+ years though, it’s that health stuff is going to keep coming up no matter what I do. I don’t need to go hog wild and eat crap 24/7 but it’s also ok to let myself indulge sometimes too. Trying to control that part of my life so intensely has only made me more stressed out in the end.

We’ll see what other changes I decide to make in the coming year. I have some more tests coming up which thankfully, don’t feel quite as scary after this whole experience.

I put this video in my latest paid post, but I never get tired of hearing it or the message (minus the excessive drinking part):

☮️❤️

Happy July!

I’m usually excited to wake up to a new month, however, mornings have not usually been my friend. My stomach would drop at the mere thought of having to wake up for anything, except maybe an upcoming trip. But even then, the desire to actually have to get up early was at about a zero.

In college, I stayed up late with my friends and had trouble getting to any class that started before 10am. Thankfully, I only had a couple of those entire span of my college career. I thrived at night. What was I missing in the morning anyway?

After college, I started working full time which unfortunately, usually involves getting up early. I definitely had a hard time adjusting to that. It wasn’t until I had a job where I worked from 10am - 6:30pm that that started to shift. I actually hated working that late. Sure, I got to sleep late, but I felt like most of my day was gone by the time I was off work. I’d sleep right up until the last possible moment—giving myself just enough time to get ready and comfortably get to the office. So it wasn’t like I had extra time in my day. In fact, I had less.

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The rest of my working career, I switched to working a more typical shift. That became my norm and I got gradually more comfortable with it. I always slept in on weekends and holidays though. Still, I gradually became more comfortable waking up “early” during the week.

Fast forward to adopting my first dog—my pug Rogy. Rogy is very much a morning dog—a quality not all pugs have. In fact, one of the main reasons I wanted a pug was because I knew people who had them and they slept late. My energetic pooch is not one of those pugs. There was a time during the fall that he started to sleep later (past 7am), but that didn’t last long and he’s back to getting up at 6am or 7am.

As a result, I realized I was missing a lot in the morning. Getting up with Rogy allows me to get so much done before lunch time. I can get to stores when or before they open, which often means before they’re crowded and there’s nowhere to park. I live in an area that can get really hot in the summer too so it gives me the chance to get out and get things done before the temperatures rise. It also gives my dad a chance to walk Rogy before it gets too hot for him to be outside. I’m fortunate to have a flexible job so I can start earlier on days I have things going on so I don’t have to use PTO (paid time off) or make up a bunch of time another day during the week.

There are less cars on the road in the morning. Seeing the sun creep up is just as beautiful as watching it set. Feeling a cool breeze when you know it’s going to be over 100 degrees Fahrenheit that day, is a gift.

I don’t get any less sleep either. I just go to bed a whole lot earlier. My body still needs a lot of sleep to recover from the day before because of my disability, so that’s not something I can skimp on.

Sometimes, I still miss being able to sleep in on weekends or days off, but overall, I think maybe I always had a morning person in me, she was just waiting to get out. I just needed a little toasted marshmallow pug to force it out of me.

☮️❤️

Middle school was not a great time for me—I don’t think it is a for a lot of kids. You’re in that weird time in between elementary school and high school. Your hormones are starting to change. You start becoming more aware of how you look and where you do (or don’t ) fit in among your classmates. It’s rough.

I had the added bonus during middle school of also being disabled. I was already pretty aware that I was different than my classmates, but I was acutely aware of it by the time I got to middle school. I also had to get braces, my skin started breaking out and the frizz set it on my previously wavy—now very curly—hair. This all made up the perfect formula for not feeling great about myself.

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At what point when you’re reading a book with ableist phrases or ideas in it, do you stop reading? Do you even stop reading?

I love reading—it’s probably my favorite hobby. I read everything from non-fiction, memoirs, history, to beach read fiction. I would say that nearly every single book that I read (every other book at the very least), has some kind of ableist phrase or idea in it. That might sound like an over-exaggeration, but it’s genuinely not.

The worst part, is I often find myself trying to give the author the “benefit of the doubt”, or I’ll reread that section over and over to see if I just read it or understood it wrong. I usually get my books out of the library. I only let myself buy books every once and a while, so it’s not hard to just take the book back to the library. It’s not like I spent money on it. Yet, the only time I’ve done this was with a book by Anne Lamott because I was so appalled—largely because she portends to be so progressive and also a devout Christian. She continues to spew out ableist bullsh*t even on her Substack here, despite people pointing out how incredibly hurtful and problematic it is.

Another time, I actually reached out to the author about a sentence I found hurtful and ableist in their book. They actually responded and we had a productive conversation about it.

I think the sheer number of times this happens in books is why it’s so hard for me to just say “screw it, not reading this.” I often wonder if I would have anything left to read if I stopped reading anything that perpetuated stereotypes and ableist attitudes about disabled people.

The reality is though, it’s not ok to keep perpetuating these ideas. It’s not ok to keep reinforcing ableist ideas about disabled people—especially from writers who are largely educated and oftentimes progressive individuals. If it’s a memoir or an autobiography and you’re sharing how you felt about something that may have happened, then at least check yourself and acknowledge your ableism in that scenario. You don’t have to erase your feelings or assumptions from the book altogether—we all make mistakes. The important part is to acknowledge it and show you’ve learned something from it.

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The other part that is so disheartening about the number of times I see ableist verbiage or stories in books is that kids who are growing up and reading (whether for school or personal enjoyment) are having these ideas reinforced at them constantly—not just in books but in TV shows, movies, on social media, from their peers. How are we ever supposed to shake the societal assumptions about us when even the things we read only reinforce them? How are we supposed to see ourselves as more and as worthy, when the books we read tell us we’re not? How are we supposed to see that most of the time, it’s not our disability that’s the problem, it’s the lack of accessibility and society’s incorrect perspective of us that is, when nearly every single book reinforces the idea that we’re a problem or there’s something “wrong” with us? Or that our lives are meaningless and we’re sad objects of pity?

I want to continue to call these things out as I see them—whether that’s here or by contacting the authors wherever possible. But seriously, it would be fantastic if the rule was that most books didn’t include ableist language or attitudes, instead of it being the exception.

If you’re an author (either of books or a Substack here), I really hope you’ll take this to heart the next time you write something (if you’re not already). Words mean something. Language means something. You always have a choice not to use ableist language or to perpetuate ableist ideas about disability and the people who have them.

Rogy, my little toasted marshmallow pug had his birthday this month! We don’t know his exact birthdate so we celebrate it on what’s called his “Gotcha Day” (the day we brought him home). It’s officially been a year since I adopted him.

I wanted a dog for so long that sometimes I have to take a moment to pause, look at him, and give myself some major kudos for accomplishing one of my biggest goals. I used to tell people I didn’t have “baby fever”, but I sure had “dog fever”. When I was rejected for a service dog after a years-long process, I doubted that dream for a bit. I wasn’t sure it was meant for me. But after a couple of months grieving and visiting a local pug cafe, I knew it was something I still very much wanted for my life.

Having a dog has been everything I hoped for in so many ways. There will never be anyone more excited to see you than your dog when you come home…or even just come back inside from being out in the garage, especially when you have a pug. Your dog will love you and think you’re the best thing no matter how sh*tty or low you might be feeling that day. Even when I mess up or don’t do something right, he still loves me.

I’ve had a lot going on medically in the last year+ too, but when he lies on my lap or gets so excited when I’m home, so much of the stress from all that just melts away.

This is a shared trait with other pugs too, but Rogy has the best personality. He’s so smart and so sweet but he also throws these looks sometimes where it looks like he’s completely judging you. He has gives perfect side eye.

He makes the funniest noises when I’m getting his food ready (and just in general). He gets unbelievably excited when we’re going through the drive thru for a pup cup. He’s also a total ham who stands up and smiles with his tongue hanging out so everyone inside can see how adorable he is. Evidence below:

I’ve never been someone who wakes up happy to greet another day. I’m more of a “I really don’t want to get out of bed” or “I’m terrified of what today is going to hold” kind of a person. When I got Rogy, that changed. He’s so excited to see me every morning. He runs all over me and tries to lick my entire face. I’m so excited to see him too and that’s given me loads of motivation to get up every day. I can’t wait to spend it with him.

It hasn’t all been sunshine and rainbows though. Two of the main reasons I wanted a pug were a) I thought they slept late and b) they’re usually not super active so they don’t need a lot of exercise. Rogy gets up at 6am and he loves walks. I’ve never been a morning person though I’m slowly becoming more of one. I wish I had been able to get him sleeping until 7 or 8 to stick. For some reason that schedule was only temporary. As much as I love him, I miss having the option of sleeping in on the weekends or on a day off from work. Dogs obviously, do not know or care what a weekend or a holiday is. We’ve tried a lot of different things, but all of them end with me inevitably having to get up. I used to hate naps but now they’re my lifeline sometimes. In the summer, his 6am wakeup works better too because it gets hot so fast here that he needs his walk ASAP.

Even when I was planning on getting a service dog, walking the dog was never going to be something I was going to do on my own. In fact, a service dog needed 60 minutes of exercise a day. Rogy needs nowhere near that and in fact, that much would be really bad for his flat nose self. I was always going to need my dad’s help (and a huge help he is). He walks Rogy every single morning. When he’s gone, I have two wonderful people who can help with walking Rogy. If he walked a little slower, I might be able to take him down the street or something but unfortunately, he’s a very energetic walker and he pulls really hard. He may look small, but dude has the strength of the Hulk when he wants to go and smell something. So walking him is out of the question for me.

Unfortunately, his pulling means that I can’t take him too many places either. When I got a dog, I envisioned staying in a hotel with him somewhere or taking him to the beach—just the two of us. I’m not I’m ever going to be able swing that. I’m always going to need help when it comes to walking him for any measurable distance. We did get him a stroller recently though so I can try take him places in that. I think he may hate it when he’s out and about because he loves saying hi to all creatures and humans, but it was actually pretty easy to train him to get it by himself.

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Rogy came from a Spanish-speaking household too so having him has given me the chance to continue to work on my Spanish. I try to use some form of command in Spanish with him everyday. We like to listen to Bad Bunny in the car too 😊🐰

I’ve always struggled with anxiety and in a lot of ways, Rogy helps ease that. Having to focus on taking care of him, or having his little body snuggled up against me at any given time, is the best natural anxiety remedy.

The flip side of that is I also get anxious about things going wrong with him on top of anxiety about things with my own life and health. It can be overwhelming sometimes. Hats off to everyone with children too because I can’t even imagine what having to raise an actual human is like, and what kind of anxiety that raises. At least my dog won’t need therapy if I inadvertently screw him up.

Some of the stuff I previously mentioned has given me a measure of guilt too. I feel guilty I can’t take Rogy many places. I see other people’s social media feeds and they’re running all over with their dogs and even traveling with them. I can’t even travel comfortably on my own right now, but all the things I can’t do with Rogy make me feel really bad sometimes. He’s such a high energy dog, I wonder sometimes if he should have ended up with a non-disabled person.

I hate saying that out loud because I know I’m buying into the ableist mentality that disabled people shouldn’t do all the things that non-disabled people do. That we can’t provide the same “quality of life” for ourselves or our pets, therefore, we shouldn’t have one.

Everyone deserves to have a pet if they want one. Everyone deserves to experience the joy and even the anxiety of it all. It is not a cheap undertaking for sure, especially if you have a dog that’s prone to specific issues like pugs are. I made sure I was financially stable before I adopted Rogy, but you of course can never be sure of what issues might come up during your dog’s lifespan.

Ultimately, I’m so glad I adopted a dog and that I adopted Rogy. Even though he wasn’t what I wanted on paper, he was exactly what I needed. His energy is infectious. He makes my parents and I laugh daily. He has the most calm demeanor when it comes to being around other people or dogs so I never have to worry about that.

It’s an incredible responsibility to take care of him, but it’s an equally incredible privilege being able to do it. When I am able take him places, the joy that he brings to people is like nothing else I’ve seen—something I wasn’t expecting when I got a dog either. People are constantly commenting on how cute he is and their faces light up when they see him.

I can’t wait to see what all our future “Gotcha Days” and years hold for us. I hope I can give back to him all the love and care he’s given to me…times ten.

Step outside your comfort zone.

Face your fears.

Two adages we’ve probably all heard in one form or another. On the surface, they seem harmless, but when you delve deeper, or if you’re a person living with any kind of disability—they can actually be quite ableist.

Let’s start with “step outside your comfort zone”. First of all, even saying “step” is problematic because not everyone has that option. It automatically excludes people from the get-g. Secondly, for disabled people, our comfort zone usually includes being able to actually access something. It’s a nice thought to try something new or do something that might make us uncomfortable, but if we get there and we can’t even access it to begin with, then it’s completely pointless (and will often leave us feeling even worse than if we’d never attempted it in the first place).

Now for “face your fears.” When you’re disabled, things that people might label as “worry” or “overthinking” or “fears” are actually legitimate concerns. What if I go somewhere and I can’t find parking? Then I can’t get my walker out of my car, or there won’t be a curb cut, or it’s too far and I physically won’t be able to do it. What if there are stairs? What if there’s too much of an incline and my legs give out? What if I fall and break a bone? All of these might seem like fears, but are actually completely legitimate concerns. By “facing” these, I would essentially be setting myself for not being able to do something or hurting myself. It’s not like trying to get rid of your fear of heights by going to the top of the Eiffel Tower or jumping out of a plane. Jumping out of a plane could leave you seriously injured too if something goes wrong, but that’s a much bigger if than dealing with a lack of accessibility.

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I’ve had a good handful of these moments in my life—I tried to be spontaneous, not be afraid of might happen, or difficulties I might face and you know what? It turned out to be a horrible experience or I couldn’t even do the thing to begin with. It left me feeling worse than I did before, and made me wish I hadn’t done it in the first place.

When you get adages like this thrown at you too, it sets you up to gaslight yourself too—it has for me, anyway. I question every time I’m anxious or worried about doing something. I usually end up telling myself that I’m just worrying too much or I’m just “scared”, when in actuality, I am probably legitimately concerned. I’ve been proven right on that more than once. I’ve had gut feelings about things and ignored them because I’ve been conditioned to believe it’s my own unfounded fear holding me back—largely because of ridiculous sayings like the aforementioned ones.

I’m not saying there aren’t any ways at all that disabled people can step out of our comfort zone or “face” our fears. I think there likely are. Unfortunately, the ways in which these sayings are usually applied, are only to non-disabled people. They’re usually applied or proposed with only non-disabled people in mind and what they’re able to do.

So I say, screw the adages and trust your gut—that’s an adage too I suppose, but that’s one I firmly stand behind because our guts have been conditioned with years and years of experience. It knows what our bodies can and can’t do and it’ll set off the internal alarm when we might be getting into something that’ll push us too far or potentially injure us.

☮️❤️

I’ve never considered myself a very competitive person. I like playing games and things like that, but I didn’t think I ever felt this overwhelming desire to win.

Turns out…I do. But not for the reasons a lot of people do, I don’t think. Or maybe they do? My desire to win games, to get good(ish) grades, etc. stemmed from the belief that if I didn’t win or if I wasn’t the best at some things, that I had no self-worth.

I couldn’t do sports. I was never going to run the fastest mile or play on a winning softball team. What I could excel at (or try to) were games, tests, school, reading—anything like that. I felt that I had to show people I was smart because that was the only way they would see my worth as a human. That that’s the only way they would look past my disability. Maybe I could be known as “the smart one” instead of the “disabled one”.

I didn’t want to have a bunch of trophies or accolades, but I wanted to feel like I was worth something—and winning or being the “best” was the only road that I saw to get myself there. I

Thanks to a very kind friend, I have a membership to Duolingo, a language learning app. I’m working on relearning Spanish. One of the features of this game is there are different “leagues” you get put in depending on how many experience (XP) points you acquire. There’s also a 1st, 2nd and 3rd place trophy and bonus points you can win. Even with something as simple as an app, I found myself feeling pressure everyday to get on the app and practice my Spanish so I could get enough XP points to stay in my league, or even to get 1st place.

I had to take a step back and realize that this competitive feeling (completely manufactured by the game, by the way to get people to pay to sign up) was overtaking my purpose in using the app to begin with: relearning Spanish. I don’t have to power through 10 exercises a day to relearn Spanish. The only reason I was doing that was to try and get enough points to stay in my league or win some non-tangible prize. In fact, I think I was learning even less Spanish because I was only focused on getting through the exercises for the points, and I was putting completely unnecessary pressure on myself because deep down, I thought that if I fell down a league or didn’t get a prize, it meant that I wasn’t good enough, or that I had failed. Damn.

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I’ve had this feeling ingrained in me for so long that it’s been (and will continue to be) a challenge trying to get rid of it. To remind myself that I’m worthy simple for being human, simply for existing, and simply for being who I am. I don’t need to win prizes or games. I don’t need to be the best at everything, or even anything. I can be the worst at absolutely everything and still have worth.

I’ve started to give myself a goal in Duolingo of just doing some kind of practice everyday. They give you daily goals and I’ve found it helps for me to focus on just achieving those. If I fall down a league? So what. I’m still practicing and learning and that was my whole reason for doing the app to begin with.

So often life is made into a race or a competition. We have to be the best, the brightest, the strongest, the smartest. Writing this made me wonder if non-disabled people are competitive for the same reasons. Do they have some other underlying feelings of worthlessness that push them to feel like they have to win at everything or be the “best” at everything?

We need more reminders that we are worthy, just as we are. Life isn’t the Olympics…it’s meant to be enjoyed and to be lived, without the added pressure of us feeling like we need to be the best or have the most medals to prove to the world that we’re worthy or have something to offer. We have something to offer this world regardless of what we win, lose, achieve or don’t achieve. It’s ok to want to excel at certain things and it’s also ok to want to get a pat on the back for doing things well. When it becomes a foundation for how you see and feel about yourself and your self worth though, that’s when it’s problematic. We have something to offer no matter what we excel at or don’t excel at. We have something to offer, period.

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There are a lot of negative things that have come out of my severe people-pleasing tendencies. The biggest being that in my 40s, I’m still trying to figure out who the hell I am outside of my desire to do whatever I need to in order to be liked.

We’re told from the get-go as people with disabilities that we’re different, we aren’t “normal”, we’re less than or, my personal favorite—we’re drains on the system. That messaging automatically creates an inner dialogue that no one is going to like you, or that it’s going to be a lot harder to make friends or find relationships. So what’s the fix for that? People pleasing. Saying, doing, or behaving however you need to so people will like you…so people see past your disability. So maybe it will mean you aren’t “worthless” after all.

When I was in high school, I had a friend that I really connected with. She was someone who saw me for who I was and who genuinely cared. But I was also friends with another group of people. They were more straight-laced and “Christian”. My other friend and I liked to cuss and listen to very non-religious music. She would come over on our breaks to visit with me when I’d be sitting with my other group of friends. One day, one of the straight-laced friends made a comment about how she didn’t like my other friend coming around because of her cussing.

I should have told her to f*ck off right then and there. But instead, because I was so insecure and afraid of losing anyone who wanted to be my friend, I wrote my other friend a note (yes kids, that’s what we had to do before cell phones) and asked her not to come over on break anymore.

She was, of course, extremely hurt. It made her feel like I was ashamed of her. I remember the first day after I’d given her the note, I had a giant pit in my stomach when she didn’t come over at break. She really did love and accept me for who I was because she stayed friends with me even after I had been so cruel. We actually ended up going to the same community college and spending more time together after we graduated.

The other group of friends? Besides the one that voiced her displeasure, I can’t even tell you who the rest of the group was anymore. And the friend who thought she was the voice of morality for everyone? I haven’t talked to her in decades (even though she lives in the same area). She was another friend on my list that would randomly decide she was tired of me and would ice me out for weeks at a time at school.

People pleasing is a curse in so many ways. I let myself be steamrolled by someone who wasn’t even a good friend to me to begin with, simply because the fear of her not liking me or losing a friendship terrified me more. It’s also a curse in how you treat others though. I had zero right to tell my friend not to come by on break anymore because my other friend didn’t like her being around.

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Hindsight is 20/20 of course and if this happened now, a) I wouldn’t be friends with the morality police anymore, and b) I would have said “screw you” and gone and hung out with my other friend solo the rest of my high school career.

People pleasing is a one way street off of a giant cliff. It will never take you anywhere but down. It’s an easy thing to say: “Don’t be a people pleaser!” I know all too well how hard of a cycle it is to break, especially for women in general. You have to know that you’re worthy just for existing—just for being you. Period.

Knowing your worthy just for existing is also a very hard thing to grasp when you’ve been told the exact opposite your whole life. But once you start believing it, no matter how long it takes to get there, that’s where the magic begins. You realize you don’t need to have dozens and dozens of friends (unless you want to). You don’t need to be the person that gets along with everyone because you’ve hidden yourself, your opinions, and your feelings away in order to facilitate that. You don’t have to allow yourself to be treated like crap simply to keep a friendship, and you don’t have to treat other people like crap to achieve that either.

Wherever that friend is out there now—we lost touch after college—I hope she’s still being her authentic badass self that embraced me so fully when we were younger. Even when I was people pleasing and not very kind.

☮️❤️

When I was in high school, I was inducted into what’s called the National Honor Society (NHS). The NHS is as follows:

The National Honor Society (NHS) is a premier organization for high school students, established in 1921 to recognize outstanding students based on four pillars: Scholarship, Service, Leadership, and Character. Membership is granted by local chapters for grades 10–12, requiring a minimum 3.0 GPA/85% average, service projects, and leadership roles

I remember standing on the stage of our high school theatre, dressed in pink skirt and pink cardigan. It was just a small group of us who had made it in. I seem to remember us all holding (fake) candles as part of the induction ceremony too.

I remember feeling very special and accomplished in that moment—something I didn’t often feel. Growing up with a disability usually meant that my default feelings were isolation, difference, not being understood, not being attractive, etc.

While not getting good grades wasn’t really an option in my house to begin with, being recognized for my “smarts” or intelligence felt good. It felt like something that could overshadow what I saw as my shortcomings being a disabled person. I would never be the captain of the softball team, but maybe I could be recognized for good grades and for knowing “a lot”.

I didn’t realize until I became an adult that this idea that I was buying into—that I had to be the “best” at something or accomplish something to be worthy—was buying into ableism hook, line, and sinker. Our society (especially in the U.S.) tells us that we’re only worthy, valuable or “contributing” members of it if we accomplish something or are the “best” at something. If as disabled people we don’t work, then we’re “lazy”, “losers” or “drains” (even as work from home benefits are stripped away at companies all over and other benefits that allow disabled people to work continue to be stripped away too). If we can’t do certain physical things, then we sure as sh*t better be smart or able to do something else.

This idea perpetuated my life even into adulthood. My friends in college used to lovingly tease me because I always used “big words”. Some of that came from reading a lot, but there’s no doubt part of it was my trying to prove to everyone how smart I was. I thought maybe if I could be seen as smart, that maybe people wouldn’t see me as the “disabled girl”, “disabled friend”, etc.

I heard a quote once that my therapist echoed back to me last month: we are enough simply for existing and being human. We don’t have to the best. We don’t have to be the MVP. We don’t have to be impressively smart. We are enough, just as we are. We don’t need to win a single award. We don’t have to be up on a stage being recognized for our good grades. We don’t have to impress others with how much we know or our big words (in fact, sometimes using big words or complicated language can leave out entire groups of people or create unnecessary difficulties for people with other kinds of disabilities).

I’m still very much a work in progress on this. I’m a recovering perfectionist to begin with—something also tied in with my need to feel loved and valuable by others. It’s slow work to chip away at something that I’ve believed about myself for so long. Something I let society dictate about my belief in myself. I’m learning to let myself be ok with just being…with not feeling like I have to be the best. Not feeling like I have to impress everyone in every facet of my life, otherwise I won’t be worthy.

Was it still an honor (pun intended) to be inducted into the NHS in high school? Of course it was. I worked hard to get that. But if I’d never been inducted…if I’d only gotten mediocre grades (which is what college was for for me 😂), I would still be just as worthy of a person on this earth. We all would be.

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When I was in high school, since I couldn’t do most things in the regular Physical Education (P.E.) classes, I was placed in an Adaptive P.E. class. It was me and three other people: one classmate who had a physical disability and two who had developmental ones.

Sometimes we had board game days or study halls, but most of the time we were still in the gym or outside doing physical activities. It was then that I actually learned how much I loved badminton. I wasn’t even half bad at tennis.

These days, the general school of thought seems to be that disabled kids should be included in the standard P.E. classes. While I don’t disagree with that—history has shown us time and time again that separate is very much not equal—I personally didn’t mind being in a separate class.

Before high school, I was in the P.E. class with everyone else and it was really hard. I often over-exerted myself trying to keep up with my classmates and when I couldn’t do something that they could, it only made me feel worse about myself.

Having a separate class, especially during high school when things can already be difficult, gave me a safe haven to be myself. It gave me a place to do what I could and nothing more. I actually felt less isolated being around other people like me (the other physically disabled girl and I were really close for a long time). I felt more isolated when I was around a bunch of my non-disabled classmates who could do so many more things than I could. I didn’t like standing out even more than I already did.

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I don’t know what the “right” solution is. I’m not an expert and I certainly can’t speak for the entire community, but I like the idea of having both options for kids with disabilities. Allow them to enroll in the non-disabled Phys Ed class, or have a separate Adaptive class in case they want to enroll in that.

From the experience I had, being in a separate class actually helped me a lot more than it harmed me. I won’t deny that I sometimes felt embarrassed when the non-disabled class would be outside with us or running their mile right past us. As I’ve said many times before, I wanted nothing more than to be like my non-disabled classmates back then. Standing out was the worst punishment imaginable in my mind.

Having a place I could go every week where I didn’t feel like I had to try hide my disability, or push myself to keep up with everyone else, really helped. If I couldn’t do something, it was totally ok, but I still got outside and got exercise at the same time. Being around other people with disabilities made me feel a lot less alone too. None of us had other classes together so we likely wouldn’t have met otherwise.

Everyone deserves to have the choice of what’s best for them when it comes to classes like these. No one should be forced to do it one way or the other way. In our formative years especially, we all deserve for school to be a place where we can go and be ourselves without fear of ridicule or judgement (I shudder to think what school would have been like for me, had social media been invented).

As you get older, no one really tells you how therapeutic nostalgia is or will become.

Right now, the pop culture nostalgia is definitely aimed largely at Millennials like me. From the return of boy bands, TV show and movie reboots or remakes, and even toys (oh hey Polly Pocket and Trolls)…so many of the things that I grew up with are coming back. When I shop at our local mall, the teens I see are dressed so similarly to how we used to dress in high school. It’s like automatic time travel every time I go.

So why is nostalgia making such a comeback? Of course, you can argue that everything always comes back around. I’m sure my Baby Boomer parents would say they’ve seen things from their youth come back—maybe even multiple times over. I think this time around, it’s much more powerful though. Nostalgia is coming back because Gen X and Millennials have lived through so many disasters and “unprecedented” times or events. We just want to be reminded of when things weren’t such a sh*tshow. We want to remember the times before life really started life-ing and we didn’t have to adult so hard.

I think in a lot of ways, the nostalgia has become a form of therapy for us too. It takes you back to a time when there wasn’t some new disaster or human rights violation every single day. When everything didn’t cost 10 times as much as it used to. When you didn’t have to think about car payments, student loans, and if you’d ever be able to afford to buy a house. When there was no world-altering pandemic. When people seemingly still believed in voting experienced politicians into office and not fascist regime starters.

Nostalgia is a quiet place you can land among the chaos. Watching your favorite boy bands tour again brings back those memories of listening to them in your room, fantasizing about your crushes on one or multiple members of the group. Checking out a TV show reboot or reunion from when you were younger transports you back to when (in theory) your list of responsibilities and worries was much much smaller.

When I take a walk down nostalgia lane (especially living in my childhood home), it takes me right back to sitting my room with my giant stereo, listening to my CDs—my biggest concerns being whether a boy in my class liked me, if I was pretty enough, or feeling the weight of being different than everyone around me. In those moments, I get a release from the weight of everything going on around me now.

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Nostalgia is an escape. It gives you a chance to take a break from all the horrors going in the world. It gives you a chance to just enjoy something that brought you so much joy when you were younger. It reminds you of a time when things maybe weren’t quite so terrible, and you didn’t have so much to deal with.

I say all this with the disclaimer that I understand that plenty of people didn’t have idyllic childhoods. Even at young ages, they were already dealing with way more pain and difficulty than anyone should be. A trek down memory lane may not be such a helpful or therapeutic thing for them.

There certainly seems to be a growing market for nostalgia and I think that’s because it’s something that a lot of us need (even if it’s not all of us). I know it’s helped me personally get through the mess that’s been the last 6 years. Now that we have social media too, the nostalgia memes that get created are always good for a laugh.

Maybe every generation has found solace in harkening back to their youth and things that remind them of it. Maybe it’s not just us. But what I can say for sure, is I’m going to keep riding this nostalgia wave for as long as it lasts.

Here are some of my favorite things from my younger years. Going to the Pop 2000 tour last year was an absolute millennial dream come true.

Over the last couple of years, I’ve seen a lot of senior citizen/elderly people-themed parties being thrown, especially on TV shows, and especially on some of the reality shows I watch (talking about you Summer House). On the surface, this may seem like harmless fun. It’s just like dressing up for Halloween isn’t it? Or having a pirate-themed party? It is in fact, not like either of those things though. Here’s why it can actually be really problematic.

• It makes light of something that people of all ages have to deal with. As someone who is in her 40s and has been using a walker for a couple of years now, it’s in no way funny for me to watch other non-disabled people have races in mobility scooters or pretend they’re using a walker to get a laugh. A walker is a very real need for me and so many others.

• It’s similar to disability simulation. Party-goers are pretending to be “old” and dressing up thinking they’re experiencing what it’s like to be old, when at the end of the day, they get to take the clothes off and put the mobility devices away because they don’t actually need them.

• It reinforces the idea that only people of a certain age use mobility devices. This one ties in with the 1st one on the list, but our society still has such a loose (if any) grasp on the idea that it’s not only people of a certain age who need to use mobility aids. When this is portrayed on TV, it only spreads that ignorant and incorrect stereotype. Children all the way to up to seniors need to use mobility aids for varying reasons.

• It portrays the idea that it’s only when you get old that you’ll become disabled or experience physical challenges. I don’t think this can be repeated enough: anyone can become disabled at any age. This is not something most non-disabled people want to think about or even admit—largely because being disabled is still seen as a punishment or “bad” thing. But it’s the absolute truth. You may not become permanently disabled, but most people will experience some kind of injury, accident, or disease that will disable them in their lifetime. It doesn’t just happen overnight once you turn 60, 70, or 80. Portraying it as such can make people who are younger and disabled feel like there’s something wrong with them or isolated.

• All of above makes it even harder for people who are younger who use walkers or mobility aids. If everyone only thinks that it’s older people that need walkers, wheelchairs, scooters, etc., then it automatically affects the perception of younger people who use them. People think it’s “weird” or “sad” that someone my age would have to use a walker. I see the confused and pitying looks I get every time I go out with mine.

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  I understand that expecting TV shows, especially Bravo reality shows, to have an accurate depiction of things like this is probably expecting too much. That being said, millions of people watch TV and watch these shows. Having/showing themed parties like this might not seem like a big deal, but it continues to perpetuate harmful stereotypes and ideas. So maybe we can just try to do better and use some creativity to have themed parties that don’t exploit, make fun of, or make light of another marginalized group? I know those of us who are used to dealing with all three of those regularly would certainly appreciate it.

☮️❤️