Disability is a Battlefield (Backache to backache we "stand".)

I have always been an activist. I always saw the world in black and white, good and bad, no in between. As a child, I would fight for fireflies and fish to be set free after capture. I was constantly fighting against my first stepfather for fairness and survival for my sister and me. In middle school, I got louder about it and never put up with a teacher's misconduct. It got me in a lot of trouble but I don't regret any of it.

As an adult, I continued the fight and became a full-time activist. I fought for animals because I saw them as the most vulnerable. I still do. My activism turned into a career in nonprofit management and I founded a successful international nonprofit for 6 years before I got too sick to continue.

Now, I am still an activist but it has shifted from animals to disability rights. This is because I am disabled now and I can't believe the level of oppression disabled people have to deal with! You don't know until you experience it. Horrific. And to think, at one time it was much worse.

When I first started using a wheelchair, I was heavily discriminated for it because I was "too young". Sorry but there's no age limit to getting sick. It was something I needed but I used it sparingly to avoid the harassment. Then I got a disabled parking placard and all hell broke loose. I was constantly yelled at by strangers for "faking" disability to get the placard. Um... It's not like it's and easy thing to get, guys. The harassment was so bad I was taking a shower on the floor of the tub because I was afraid of the judgement I would get from my own family if I got a shower chair.

Eventually, I couldn't go without mobility aids at all anymore so I started with a rollator and now I use a power wheelchair I was prescribed through Medicaid. I don't get as many comments anymore because it's now very obvious I'm sick and I now live in the Midwest where everyone is nice to your face at the very least. However the discrimination and oppression is still everywhere.

On a trip to the town where they filmed The Vampire Diaries, there was no way to a certain store/museum except a ton of stairs. I had to have the restaurant upstairs hold my rollator and have my husband hold me one step at a time to the bottom and back up with breaks. When I went to a bookstore that I was excited about, I couldn't get through the doorway with my wheelchair. This has been a repeated pattern. There's always steps or the doorway is too small or I can get in but the place is so packed with merchandise I can't get around.

And then there's the passive aggressive comments, mostly on the internet, but it still stings. "Myalgic Encephalomyelitis isn't a real disease", "Girl, did Michael J Fox Film this?", "You misspelled...", "Don't you think you rely too much on your husband?", "Maybe drink some goat milk and get some sun". It's never ending.

The worst part isn't the comments though. It's the impatience of people in today's society. My cognitive function isn't the greatest and my ability to talk is getting worse with time. Even healthcare workers often don't have the patience to wait for me to form a sentence sometimes. Even my husband doesn't realize it's not that I didn't say "I love you too". It's that I can't speak above a whisper at that moment. It's incredibly difficult. I'm afraid to have people over because I repeat the same information without realizing it and my speech is just atrocious. There must be a different part of the brain that allows me to write. Though, that has declined over time too.

Another thing that is so hard is being underestimated constantly. Even though my cognitive function is declining, I'm smart and I know how things are supposed to go. People see me in a wheelchair and talk to me like I'm a child. They know I'm disabled and they lower my food stamps benefits every single time they recertify because they assume I don't know the legalities. Don't get me started on the medical gaslighting. This makes me extremely self-conscious so I'm always dropping the fact I have a Master's Degree with honors to "prove" I'm smart, to use as a shield. It doesn't always work.

Ugh, and here's another part of disability discrimination I didn't want to talk about. Service animals. No one understands the laws and people who follow the laws are consistently not believed for their service animals. First of all, only dogs and miniature horses can be service animals and they have to know just one task that helps with your disability. My dog alerts me when my heart rate gets too high and I need to take it easy. Emotional Support Animals do not have the same rights as service animals, which is frankly dumb because my rabbit can pull me out of a PTSD flashback or panic attack like no one else but whatever. The most important thing to know is these animals need a letter from a legitimate health care provider that has a history with you. Those websites on the internet with licenses and claiming to put your animal on a service animal registry? Scams. And they’re so good at scamming that businesses don't bother to read the ADA laws and instead expect to see a service dog license or registry. No one can ask to see your letter for your animal except major transport, like airlines, and landlords. That's it. If someone is asking for papers when you're checking into a hotel, they don't know the law. This situation happens A LOT. I have been turned away with my service dog. I have had to pay fees that should have been waived. It's ridiculous

More about service animals - why anyone would fake bringing their pet with them is beyond me. It's not an easy job. You have to pack more stuff. You have to keep the animal obedient. You have to check the service dog policy ahead of time because people are uneducated. You have to know where the animal is allowed to use the bathroom in the facility. It's sooooo much work. My dog hurt his only right leg in April so he's retired from public service work now and it's such a relief for me not to bring him places. But it would be great to have him around to let me know when I need to cool down. Also he's so used to being with me, he panics when I leave so I have to get a sitter, which is expensive.

Anyway, all of these "super fun" occurrences have put me in a place in life where I am afraid to leave my home to go anywhere. It's already exhausting to get dressed and in the car but getting somewhere I'm looking forward to going where they insist it's accessible only to get there and not be able to go in further than the front door is so aggravating and disappointing. Honestly, it feels like rejection every time and that's not great for my complex trauma. I usually end up giving up and going back home.

The world isn't built for disabled people. We have the ADA that is supposed to protect us in the United States but it's not enforced. Why does it take 30 years to make your shop accessible? Honestly, it is just discrimination at that point. I know building adjustments are expensive but there are grants and organizations willing to help. You don't have to do it alone. And, honestly, you're rejecting a whole group of people by not making your businesses more accessible and therefore losing out on sales. What really blows my mind is a lot of these spaces boast about being inclusive. Maybe they’re inclusive to some communities, but definitely not the disabled.

So, now I spend a lot of days fighting stigma, advocating for myself, and writing letters and reviews to make places more accessible. I even joined the board of directors for a local disability rights organization. I wish I could do more for the animals but by the time I'm done with everything I'm doing for myself and the disabled community, I'm exhausted. I can still be vegan and still adopt rescue animals as I'm able but no more than that right now. It makes me feel an intense feeling of guilt, like I just gave up on so many animals suffering. But right now, I'm suffering and I can't help others suffering before helping myself. So, the fight for disability rights continues...

(Listened to Rediscover the 2000's: Pop Punk on Amazon Music while writing this piece)