Why Disability Pride Month Hits Differently This Year
By Stephanie Keesey-Phelan, Ph.D., BCBA-D
Just a few days ago, July 26th, 2024, was the 34th anniversary of the Americans with Disabilities Act (ADA), the date around which Disability Pride Month was born. At The Dog Behavior Institute, we talk a lot about our values and what is important to us as individuals, behavior analysts, and small business owners. One of the first things we list when we talk about values is accessibility. It is incredibly important to us that our services are accessible to anyone and everyone who needs them, and there are a number of ways we work to incorporate this into our services. One example is that we offer sliding scale cost options, and free enrollment for a BIPOC participant in our professional courses and online classes. But we also consider accessibility when it comes to actually providing the services we offer, whether our services are live in person or online.
So you can imagine that, when we first learned about Atlas Assistance Dogs at a conference a few years ago, Ran and I were delighted to see how our values lined up with those of Atlas. If you’re unfamiliar with the organization, Atlas Assistance Dogs believes that anyone who would benefit from a qualified assistance dog should be able to have one. They support disabled people* to train and certify** their own service dog, and they do so at low cost and using positive-reinforcement based and ethical training methods. You can see why we were excited to learn from and work with the folks at Atlas (and for more information about the organization and service dogs, check out our interview with Molly Neher, Director of Operations and Programs)
Last fall we were delighted to apply for and be accepted to their Team Facilitator Certification program. In this program, we were trained to work directly with Atlas clients to help them prepare their dogs for service work, including taking and passing a Public Access Test (PAT). The training process for the Team Facilitator Certification included completing a number of online classes. The online courses were comprehensive and included content on disabilities, disability law, service dogs, and service dog training. We were required to complete quizzes, submit training videos, and provide feedback along the way. Once these were complete, we spent a whole day each weekend in February meeting virtually and gaining even more understanding and skills to prepare us for our roles as Team Facilitators.
I couldn’t have been more excited to participate in Atlas’s Team Facilitator program. What I didn’t realize at the time I applied was that I would soon become much more intimately familiar with disability than I could have imagined when we started this process.
In September of last year, a small nodule had formed on the middle knuckle of my right middle finger. I had broken that finger in a swimming pool accident the year before so I figured it had just healed in a funny way. It wasn’t growing, though I couldn’t get my rings over it, so I shrugged it off. A few weeks later in October, I began to notice that I couldn’t get my wedding ring over the knuckle of my left ring finger. If I could manage to squeeze it over the knuckle, it fit just fine, but getting it back off again would be a feat. I chalked this up to weight gain (... in my knuckle?) or the swelling that might happen occasionally if the weather was too hot or I had been out walking with Kerby for a long period of time. My knuckles were a little sore but that was about it. The fall continued on and I was accepted into the Atlas program and began my online training.
****
Fast forward to December when I was at a doctor appointment for a routine check up of my endometriosis (a chronic illness I had been diagnosed with for a few years; honestly it should be considered a disability - it can be incredibly debilitating). My doctor asked if I had any new symptoms, which I didn’t, but I was looking at my hands at the time and said, “Oh actually, this probably isn’t your area but I’ve had some swelling in my knuckles…” She frowned and approached, taking both of my hands in hers and looking carefully at the knuckles. She looked up with just the tiniest etch of worry between her brows, “Do you have rheumatoid arthritis in your family?”
I didn’t have a family history of rheumatoid arthritis (RA), but as the weeks progressed and the holiday season descended, my symptoms intensified. My hands began to ache first. It was worse in the mornings but it didn’t get all that much better throughout the day. This was followed by aching in my feet, elbows, and knees and an all day fatigue that made getting through any given day an epic task. A burning sensation took root in my knees and stayed put for days at a time. Everything felt like a challenge - particularly some of my favorite things like hiking with and training Kerby, my then 2 year old miniature Australian shepherd, whose needs related to physical and mental exercise did not dip as my ability to provide those things did. Our regular 30-45 minute morning hike would sap all my energy for the day. I was constantly dropping my leash, my clicker, poop bags, and treats (though for anyone who knows me well, accidentally dropping treats has been a lifelong challenge, haha!). I was exhausted, frustrated, or both, most of the time. I didn’t have a diagnosis but all signs were pointing to one.
I received my RA diagnosis the morning before our first live, virtual Atlas workshop. The diagnosis was later corroborated by two additional, independent rheumatologists (I was learning about how this diagnosis, this disability, was going to become not only something I had to live with, but something that took up the time and energy of another part-time job). I will never forget sitting in the first session of the Atlas workshops with other Team-Facilitators-to-be, faced with questions about why I was there and what I hoped to get out of my work with Atlas, holding back tears as I disclosed my new diagnosis (something I chose to do) and asked for grace from the group. I knew the course material was likely going to land much differently for me than I expected when I first applied to the program and I wasn’t sure how that would go. I have rarely felt so untethered at the beginning of a new undertaking as I was during that first session.
But what could have been an incredibly difficult experience turned into such a gift. I couldn’t imagine going through something like this with a more thoughtful, caring, ethical group than the Atlas team and other participants. My pain and diagnosis were acknowledged and validated, and it never felt like the elephant in the room. AND, I was there to learn a new skill set to help others and I did just that. Just like we would strive to do with the Atlas clients we work with: meeting people where they are, supporting what they can offer, and making space for people to have their needs met, so Atlas did for me. To that end, I am delighted to share that we have a new page on our website dedicated to information for potential Atlas clients or folks who want to learn more about Atlas and what they do. If you are in central or eastern Massachusetts and want help training your dog for service work through Atlas, we would love to connect with you. Please check it out here.
The Disability Pride flag
This blog is being posted on my first day on a new medication. If you’re reading this anytime in the morning, I’ll be cozy at the doctor’s office getting an infusion for a few hours. Between doctors appointments, phone calls back and forth between pharmacies and my insurance carrier, symptom tracking, and a plethora of other tasks, RA easily takes up 10 or more hours of my time every week. We have devoted half a cabinet shelf to the medications I take at home and various other tools for life with arthritis such as compression gloves and salves for sore joints. I’ve joined a support group for people with rheumatic diseases (an evidence-based group of course, once a scientist, always a scientist!) that has been an incredible lifeline. In what feels like a very short period of time, my life has changed dramatically. And this is the first year that Disability Pride month has felt so very personal. I’d love to say that I have some thoughtful and informed perspectives on the month and its impact, but honestly I’m still wading through my own internalized ableism and general bewilderment at the ever-changing landscape of life in my body. What I can say is I am appreciative of the prompt to take a moment and reflect on my own experiences and those of all the spoonies*** who have come before, those who are managing chronic illness and disability today, and those who will join the world’s largest minority in the future.
There are so many ways to consider getting involved and making a difference in this area, whether it’s making a donation, volunteering, or just taking some time to learn more about disability, disability pride, and service animals. Though Disability Pride Month is coming to an end, this is far from the last time you’ll hear us at DBI talking about our values around accessibility or our work with Atlas. We couldn’t be more excited.
* We recognize that many practitioners use “person-first” language (i.e., “people with disabilities), and many disabled people use “identity-first” language (i.e., “disabled people), though this varies across individuals. Our practice is to always use the language that someone identifies for themselves.
**Note that legally there is no requirement for service dogs to be certified within the United States. However, it can be beneficial for service dog handlers to have documentation to show that their dogs have been formally assessed for their service work. You can read more about this here.
*** Spoon theory is a metaphor relating to how much energy (physical, mental, and emotional) someone with chronic illness (i.e., a “spoonie”) has on a regular basis. The term was coined by Christine Miserandino. A google search will bring you lots more about spoon theory if you’re interested!