Category: Disability

I Have Been Sick All My Life

A white woman on a gurney just outside the surgery recovery room. A white physician and a nurse are on either side of the stretcher, either talking with her or pushing the gurney. The photograph was taken at lower than eye level.

I am immunocompromised: Please Consider Me
This has been a really difficult and scary year for me.
And for so many of my friends and fellow disabled community members.
We have heard over and over that our lives don’t matter.
And now that there is a vaccine - the world wants to leave us behind.
We may be slightly more protected once vaccinated
However, we cannot let our collective guards down
I cannot suddenly say ‘yes’ to all these magic gatherings that people are planning
Not until there’s herd immunity
And even then, kidney disease does not have good Covid outcomes
And I am so angry
I feel scared

I am constantly remembering the fact that 
Eugenics actually began in America - the United States
The fact that Alexander Graham Bell wanted to eradicate the Deaf community
In the 1800s my people were systematically deprived of their language
And that is something that continues to TODAY
So excuse me if I am angry
If this year has made me so incredibly scared
That my partner has been carefully working from home all year
That they have done all the medication runs - which we couldn’t get delivered
And I have pretty much stayed inside
And I persist in wearing a mask outside even now
Because I cannot trust anyone
I have so many friends
Who have personal experience with devastating illness
And should know better
If you could reduce your risk of dying - as a well person - why wouldn’t you
Why must you deny the many many years of research
(Which my best friend does so I know how long it has gone on and how serious it is)

Why must you tell me that my life and the lives of others at high risk 
Do NOT matter to you?
And the worst part is
I already felt like my worth was nonexistent
I already struggled with suicidal ideation
I already believed that there was no space for me in the world
WHY must you confirm my fears?
And tell me that my life doesn’t matter to you?
Please please consider me and so many others like me
And please do your part to protect our lives.

This piece was written thanks to a monthly theme from Illuminate, a writing community from The Kindred Voice.

Read more pieces on VULNERABILITY from other Illuminate members:

Being Vulnerable With My Body by Hannah Kewley

Quitting Cold Turkey by Mia Sutton

To The Women Working in Male-Dominated Fields by Christi Jeane

Anxiety Hangover by Christine Carpenter

Butterfly Wings by Megan McCoy Dellecese

with love, eunice by Eunice Brownlee

Dreams of Running

image description: Jennifer running across the finish line at a triathlon, she wears knee length leggings, a blue fleece jacket, and white sneakers.

I spent a lot of my young adulthood running. Running away from the terrors in my head, both literally and figuratively. I started training for triathlons in a practical sense during my senior year of college. I always struggled with sleep and running, or swimming in particular, was the only way I could sleep – I had to wear out my body so my mind would quiet enough.

I graduated into a recession – many of us in the mid 00s did. I had spent my whole life being told that if I worked hard, graduated from high school, went to college, and graduated with the best grades I could get, that I would be able to find a job that was reliable and steady and would overlook my disabilities. That was not the case.

So I ran. I ran to outrun the voice in my head that told me I was an absolute failure. That all my hard work was meaningless. I ran to get away from the fact that I hated myself for all of that – for the failure, for the disabilities that I could mostly hide but would never be able to ignore or forget.

When I finally got a ‘real world’ job, it was one of those places where I felt like a replaceable cog in the machine. I ran there too – I would take my lunch break, lace up my sneakers, and run around the lake just down the street from our building. I would cry as I ran because I was constantly feeling left out, not understanding or being included in office gossip even though our cubes all looked out to each other and I could see everyone talking and laughing without me.

I worked hard at that job. I loved working in filing and I loved organizing – I also loved the fact that it didn’t force me to sit on my butt all day. I coped with not being able to hear co workers by walking over to their desks to ask questions and get directions – rather than phoning them, which everyone else did. I knew I needed to lipread them to be able to follow so this was my way of getting my needs met without outing myself as a disabled person.

I woke up really early most days and I would either walk out my front door and run down the street – or I would hop in my car and jump on a treadmill. If I was at the gym and on the treadmill, I would lift afterwards. Every other day I would absolutely go swim laps before my brain woke up enough to complain to me about the cold water.

I don’t know how I managed to keep going like that either, when I finally quit that job and moved away from my home state I wasn’t running to get away as much. I was running because it made me feel good, because it was a way to get to know my surroundings, and it was a way to build a community in a new place.

Because things changed – I started processing all the reasons behind my running/workout obsession. It was a good thing in many ways, but it also brought to light a lot of really difficult internal processes. It’s something I am still working out to this day. Maybe you can relate.

What things have you used to cope or how have you run away from things in your life? Comment below!

❤ Jennifer

Holiday Gift Guide: Dog Mom Edition

This holiday season is challenging for me, now that we only have two dogs and my longtime service dog has gone over the rainbow bridge. But for some reason, concentrating on the pet dog and service dog in training we do have is helpful to distract me and make life a little brighter.

There isn’t much more fun for me than giving my service dog in training pup new toys and sometimes finding new (or replacing old) devices that make our lives with pets easier.

A dark miniature schnauzer curls up against a human’s legs in the foreground and a lighter schnauzer is curled up against the end of the sofa in the background.
image description: gift guide: dog mom gifts. images include a spot bot, a car belt harness, an automatic ball throwing device, hooves and antlers to chew, dog treats, and a stuffed dinosaur.
  1. SpotBot Pet Handsfree Spot & Stain Cleaner – We have replaced this a few times. Not by any fault of the spot bot itself, more because of inattentive cleaning patterns. It works GREAT. Got our carpets in our old rental that were off white when we moved in back to true white when we moved out in SPITE of five years of pets and being right on the backdoor. – If you have ADD be aware that it needs to be immediately emptied and cleaned when it’s done cleaning the rugs otherwise it does tend to gunk up the gears.
  2. Dog Safety Vest Harness – We bought two of these for use in all car travel with our dogs. It keeps them safe and keeps me from spending all my time being worried about them falling off the seat.
  3. Automatic Ball Launcher – I do not have and have not used this, but it looks like it would be a really fun toy for both our toy-chase obsessed SDiT and his buddy the cat.
  4. Natural Cow Hooves for Dogs – We have these and have replenished them for the dogs every year or so. There are plenty to go around for the two of them and they last a long time.
  5. Zuke’s Mini Natural Soft Treats – Dog treats are a very individual sort of thing, but we have used these mini treats very successfully in training and the pups love them. The size makes it much easier to avoid overfeeding.
  6. Deer Antler Dog Chews – my older dogs never got into these antler chews but the SDiT loves them so he’ll probably get a pack in his stocking this year.
  7. Dino Dog Toy – This dinosaur dog toy has chew guard technology. It also has a squeaker – which is one of my dogs favorite things ever. We haven’t tried the chew guard technology yet, but I’ll report back!

What are your pet’s favorite things? Any toys we should look into?

❤ J

Holiday Gift Guide: Chronic Illness Edition

Knowing what to get for your friends who are disabled, or chronically ill is sometimes challenging – there are allergies to consider, many are poor, living in very small spaces, and often your best bet are things to help comfort – or checking their Amazon wishlists!

Here are a few things that I personally use and appreciate for comfort when I am dealing with pain flares, ongoing colds during the beginning of winter, and being stuck in the house because of illness.

  1. Weighted Blanket – This has been invaluable to me since the loss of my service dog. He used to provide a very direct weight to help me sleep, and this blanket does a fairly decent approximation. It has also anecdotally helped many other people both disabled and abled.
  2. Electric Blanket – I prefer the Serta and Sunbeam brands – and I especially love the reversible sherpa and fleece throw I have on the sofa right now.
  3. Kindle or E-Reader – I get so much mileage out of my Kindle, in general, but especially when I’m sick. Cold and flu season means I spend a lot of spare time inside in bed or on the sofa catching up on sci-fi reads. E-readers are especially good for disabled people because we can check out books from the library on them – you can change the formatting to larger or smaller letters to help with vision – and they are much lighter than chapter books or other tablet readers to hold for long periods of time.
  4. Car Adaptor Electric Blanket – This blanket is ideal for long car rides over the river and through the woods to grandmother’s house – or Aunt Janelle’s in my case – I love it because we have to keep the car colder for both my partner AND my service dog. This helps me regulate my own temperature and stay comfortable for long periods of sitting.
  5. Contour Orthopedic Cervical Pillow – This pillow has helped immensely with neck and back pain from a pinched nerve. Supposedly sleeping on our backs reduces pressure and compression to help with chronic conditions. It is also helpful if you have sinus problems – for example – I notice my partner snores if he’s not sleeping on his back, it’s particularly bad if he ends up on his stomach. We both have these kinds of pillows to support back sleeping.
  6. Bathrobe or other cute loungewear – I personally linked the bathrobe because I like that it goes well with my final dream gift, and it is nice to have something easy to throw on to answer the door when you spend all day on the sofa.
  7. Coleman Inflatable Hot Tub – This hot tub was a wishlist purchase. After spending a weekend at the hot springs in Colorado, we realized that a lot of ongoing pains we had were drastically reduced. So my partner started investigating how to go about getting a hot tub in a Baltimore row home — let’s just say that wasn’t a very inexpensive or easy endeavor. He finally came across the Coleman hot tubs and realized we could do it! We got the square one because we’re very particular about shape and aesthetic but the round ones are even cheaper! This is a GREAT family gift.

Let me know if there’s any particular disability mitigating gift you’ve thought of or given that you loved over the years. Thanks for reading!

❤ J

ARTECHOUSE: Infinite Space

image description: photo of a shadowed person in a mirrored space, overlaid the image are the words ARTECHOUSE What You Need To Know: Especially If You’re Disabled.

If you’re a disabled person considering visiting ARTECHOUSE in Washington, D.C. here are a few things you will want to know before heading out and shelling out for a ticket.

First, the location is nondescript – the entrance is next door to chain restaurants well outside the typical D.C. center – don’t plan to walk to this museum from your stop at the Capital or the Lincoln Memorial.

Be prepared to do a lot of unusual standing and sitting. The foyer where you enter the museum is a small square space, all hard surfaces with only a few small benches. Everyone has to read and sign documents upon entering about understanding the nature of this exhibit – even before you get to see what it is, or have an idea what you’re agreeing to.

There is one elevator that services the museum, however, it is very small and as we are not wheelchair users, we were not able to absolutely tell if it was possible to get down to the museum level by elevator (or other accessible means).

When you get to the rooms where all the technological art is displayed – there are warnings at every doorway to let you know that if you have vertigo or any issues with flashing lights to not enter. I’m sure it was somewhere in the initial paperwork we signed as well, but it *is* disorienting if you ever have issues with balance or flashing lights. Be aware of this. I have vertigo and was mostly ok, but if I was having a bad day it would not have been the place for me.

The whole point of the exhibit was the special Infinite Space room, which required signing up again, and waiting for up to 30 minutes – for what was a mere 2 minutes in the exhibit – shut in with two or three other people you didn’t know. Something to be aware of. We ended up in the space alone because of being Deaf and having a lot of difficulty communicating with the staff members who were taking names and making phone calls for turns.

We did enjoy hanging out in the beanbags and getting kombucha at the bar.

image description: orange kombucha in a black futuristic goblet with a special ARTECHOUSE coaster underneath.

As the current iteration of ARTECHOUSE is data based, my computer programming partner looked over all the code he could see and was not impressed. We still enjoyed the overall experience, but if you’re knowledgeable about data and coding this might not be much fun for you.

All in all, it was an interesting experience – worth it for one trip – and probably not something we would ever venture out to see again.

Disability Pride Month Reads : Moon-Bright Tides.

I read this book as part of my review of #OwnVoices disability authors/writers for disability pride month.

This is a sweet, cute, quick read about a romance between a mermaid and a witch. The witch is sad, lonely, and traumatized because of how she ended up being the person to sing in the tides. The mermaid she meets is also sad, and literally starving – they connect and it is a lovely story of friendship and care taking that becomes love.

I judge books by several things – character development, world building, story, and how quickly I want to read it all! This book easily met my requirements. I suggest it if you are looking for a sweet, quick read.

Weekend Wander: Boulder

I have traveled to Boulder – both when I lived in Colorado – and several times since moving to Maryland. My best friend growing up lived in Boulder and a chosen family member lives fairly close now as well.

image is of light trails around a hairpin curve above Boulder Colorado’s city lights. Overlaid in white letters are the words Weekend Wander: Boulder, Colorado. Photo by Shiro hatori via Unsplash.

On your first morning in Boulder, I would take you out for brunch. The Buff is a Boulder institution. I would recommend a Homestead Skillet – and if you like it spicy, I’d go for the Ole since you’re in Colorado. It has chorizo, green chile, and jalapeños. If you love coffee, give the local Nitro Cold Brew a try. Or we could go for a breakfast burrito at Illegal Pete’s.

It’s famous for a reason! You shouldn’t miss Pearl Street. The downtown mall was designated The Downtown Boulder Mall in 1977. It also prohibited cars – and this made the mall more attractive to tourists and locals alike.

If you’re up for a treat we could check out the Boulder Dushanbe Teahouse for the location – as the teahouse is considered one of Boulder’s most attractive and popular tourist attractions. It is also a local favorite for good tea, food, and atmosphere. When I was in high school we would drive the hour across the front range just for tea and chicken salad!

Boulder has a fairly accessible trail system (if you can handle hills, anyway) on the Boulder Creek Paved Pathway – with 7 miles of paved path from the foothills all the way to the plains where you can get a taste of the landscape of Boulder.

You didn’t ask, but I’ll tell you that there are a bunch of must-dos and sees in Boulder! One of them is to take the Celestial Seasonings factory tour! The tour is wheelchair accessible and the factory has chairs on site. The Celestial Seasonings brand began in 1969 when one of the founders hand-picked herbs in the Rocky Mountains.

If you’re an outdoors person or you enjoy hiking, Boulder is the place to be for easy access to trails of all levels of difficulty. Chautauqua Park is full of trails and there is a trail map here. Unfortunately, there isn’t great indication on accessibility – only on use type and elevation.

Image description: a blonde with her hair up is posing in front of the final ascent to Royal Arch in the Flatirons.

My latest hike in Boulder was Royal Arch in the Boulder Flatirons. This is a 3 mile strenuous trail, that ends at a natural rock arch overlooking Boulder with a gorgeous view. It tends to be busy though (as evidenced by all the people in my photo above). I enjoyed the hike and the view made every step worthwhile.

Want to collaborate and share your city! Email me.

 ❤ Always, J.

Re-Introduction

Image description: redhead wearing a turquoise tile printed dress and black cardigan is photographed from the waist up. She has her hand in her hair and looks down in the image, smiling. Dress by May Designs. Photography by Ashton Kelley Photography.

Hi friends! Well, I hope we’ll be friends or at least acquaintances.

Welcome to my little corner of the internet.

See, I started this blog a long time ago when I started feeling like I should start saying some of the stuff I was feeling about the state of the world and our country today – especially as a Deaf, chronically ill, and disabled person. But if I’m honest with you, I’ve always been really worried about what people think of me and I struggle a lot with feeling like I don’t belong anywhere.

So instead, over the last year, I have been writing more serious things and working with an editor to get my feels out in the world. We have battled that demon of imposter syndrome and we put him to rest (in a sense).

Also, over the last few months, I have been reminded that I can’t do this life thing on my own. My body continued to fail me in one sense or another, and it took finding a physical therapist out of network to begin to get help. And then, immediately after my last birthday, I began the search for a therapist or counselor again. That’s a story for another day, but I am getting help and support from both the medical community – in a partnership for once – and from my immediate very small support network.

So now that I am working on myself, I am hoping and hopeful that I will have the emotional bandwidth to begin to talk about life again. Both about life as a Deaf person with a Deaf partner. And life as a disabled and chronically ill person who has to constantly challenge the systems of ableism and audism that are set up all around us.

I promise I don’t just write about social justice though! Feel free to check in for lots of other fun content – from training my puppy, to organizing my home, to workouts and body acceptance, and finally to lots of yummy recipes.

Thank you for being here. I appreciate you and I am looking forward to this community.

❤ Always, J.