Why Advocacy Is Important (and Why I’m Tired)
Happy Friday everyone! I hope you are all, (at least for us Californians), enjoying the rainy weather and staying safe during these trying times. I come to you this week
, not to talk about what everyone else is talking about, (Covid-19), though I will say that my college campus has been shut down, but something closer to home.
As a young adult living with a disability and who attends college with a service animal, I often find myself having to wear my disability advocate hat. It’s a hat I am all too familiar with, having worn it since I was in elementary school. (one size really does fit all.) Unlike grades K-12, college don’t have IEPs. We don’t have a support team of teachers, your parents, aides, and orientation and mobility specialists to help outline your goals and what they want you to do. You have a Disability Support Services center, your own voice, and as far as I am aware, educational plans for us attending community colleges. We get as much direction on what to do and what our next steps should be in the form of accommodation letters, which get sent, by us, to our instructors letting them know you are in their class and that you will need more assistance. In my case, I go even further, and I directly email my professors, letting them know that I do exist and please just ask me any questions so we can break that awkward barrier. Surprisingly, it works. But not everyone is comfortable kicking down the wall of awkward dancing around the disabled elephant in the room. And that’s more than okay. You can disclose how much, or how little, of your disability as you please. This is just my way.
I learned how to advocate this way from my mom, who is, if you don’t know her, a spitfire, all hands-on board mom who will call the superintendent and inform them of your sheer incompetence. I admire her for that, because her actions lit a lot of fires under people’s asses, and I was able to get equal access in my class… one way or another. Unfortunately, (or fortunately for the professors), Spitfire Mom is not there in college to be an advocate. She’s there to drop me and my guide dog off and maybe even sometimes give us a ride home. She’s done her job. She’s taught me how to use my voice. And unfortunately, the frequent use of the Disability Advocate Voice is extremely tiring.
I am often exhausted by being denied access to textbooks, classes, and sometimes even daily life. It’s a near constant thing I must battle. Not just because I’m blind and most public spaces do not accommodate for Braille readers, but because so many people are afraid of Dodson. Yes, people fear my fluffy, big brown eyed love bug who will roll around on the ground with no shame and be every one’s friend. But Dodson is, by legal definition, my mobility aid, so while you don’t like him, you can’t deny him nor myself access.
If you are at all familiar with being a guide dog handler, you know that the National Federation of the Blind has a Ridesharing Service survey they ask people to fill out no matter if they have or have not had a bad experience using the Uber or Lyft ridesharing apps. The reason for this? Because drivers have been denying access to handlers and their dogs by refusing to let them enter their vehicles, driving away, or, in my opinion, the lowest of the low, driving away and saying they never saw you, using your disability against you. It’s… frustrating. No matter how often the terms and services of these rideshares explicitly say it is against the law to deny a team, people continue to do it regularly. And, that, is, exhausting.
Have I been denied? Oh god yes most definitely. It’s frustrating and makes you feel like less of a person because they don’t trust that your dog won’t harm them or dirty up their car. I try my best to reassure them that Dodson is not a harm and well-behaved, but of course I can’t guarantee perfection. He’s a dog. He will do… dog like things. He gets confused. I can’t tell you how many times he’s jumped onto the seat of a low riding car thinking it was the ground and my mortification because I just told this driver that he was well-behaved. He is, but he makes mistakes. And we need to make room in our judgments to accept that. But the more denials I get, and the more advocating I do, the more tired I get. I never have energy to be angry, because anger harbors bitterness and resentment, which quite frankly, does not lead to happiness. I’m blunt, direct, and go to the top if I must. Because even though I’m exhausted, I realize that I’m not just fighting for me. I’m fighting for other people like me who may not have the courage to stand up for themselves, or who may be a new handler like I once was those almost two years ago and don’t know their rights. I’m tired… but I forge on. Because as much as I complain and snark about the blind community, I am a part of it simply by being a fellow blind person. In these trying times, I lean on fellow disability advocates, fellow guide dog handlers, or my absolute favorite…. Naps! They’re wonderful, I promise. But this gives me the strength to keep fighting, whether it be in academia or in real life. I’d love to say that my advocacy hat comes off the moment I step off campus, but it’s always being worn backwards under my Real Me hat, just waiting to be flipped around and used.
I will admit a lot of my anxiety and resulting issues have stemmed for constantly being an advocate. I’ve suffered burnout, I’ve cried and bitched and raged in the comfort of my space. I’ve used my social medias to rage at the sighted world because I am constantly reminded that this world was not created with equal access in mind. Then I remember…. Being a disability advocate means paving the way for equal access. But I want to make change, and I want to help humanity in whatever way I can… so I keep going. But it’s mentally, emotionally, and physically taxing. Most of my rides on Uber or Lyft are spent answering a thousand questions about my dog, answering a thousand questions about my blindness, and all in all just wishing I could be left in my introverted bubble. But I tolerate it, because I am one of the few disabled people who don’t mind being an advocate. We as a blind community are not obligated to be your teachers, to advocate 1000 percent of the time. But if none of us do it, then who will?
In a recent conversation on Twitter with another blind content creator, we discussed a recent YouTube video by famous YouTuber Molly Burke. Molly is a blind Canadian turned L.A. creator who has a guide dog. She’s famous for her makeup tutorials and other advocacy work in the fashion and makeup industry. She also happens to have a guide dog. In this recent video, she discussed the unfair treatment of being denied access to rideshares. I will say, I echo her frustrations and sentiment. I understand feeling frustrated and like you don’t belong in society because of something out of your control. Unfortunately, my sentiment does not quite end the same as hers; fifteen minutes of crying about the unfairness of it all and lamenting that she wanted to buy a car to end the tirade of access denials.
Molly seems to be a wonderful person. She uses her platform to spread awareness about blindness, but she often fails to emphasize that not all blind people blind the same way she does. In her video, she describes hiding behind a pillar while her mom waits for the Lyft then springing the surprise of having a 90-pound guide dog on the unsuspecting driver. These actions inherently set up the rest of the community to be expected to be deceiving souls out to sic our totally controlled service dogs on your unsuspecting sighted selves. While I disagree with her method, her response to buying a car instead of using her platform to advocate for the blind community has had many people up in arms. Listen, I want a car just like anyone else. But not because that way I can stop being denied. I want a car, and not just any car– a Jeep of all things,– because it is so inherently Nat. It screams Nat. I don’t know where my love for Jeeps came from, but having a car of my own with a hired driver who doesn’t mind my loud singing, going out for random cruises, or my dog sticking his head between the front two seats is my dream because it is just an extension of my character. Molly’s idea is that getting a car will end the poor treatment she receives. And this leaves the blind community in the lurch, asking her why she’s using her platform to cry about the injustices? Why does her advocacy stop at what’s on brand for her, fashion and makeup? She holds a unique position of importance, as many people will see her and assume every blind person is just like her. I’ve personally had to let people know that yes, I know who Molly Burke is and NO I am not like her.
Many people who are blind or visually impaired receive government benefits, with employment rates being so low. I am not ashamed to say I am one of them. It is… HARD. It’s extremely hard to keep dreaming that one day I will get my Jeep from working hard and getting there. A lot of people cannot afford to dream of such luxuries, let alone buy a car. That is not the answer. It should never be the answer. But when you hold such a delicate position of power as being the link between the sighted and blind communities, the majority of blind people WISH for more advocacy across all aspects, not just fashion.
I’ve personally tried reaching out to Molly, because I’d love to sit down and have a conversation, blind woman to blind woman, about advocacy and what it means. Growth comes from understanding all aspects, and I want to understand her and let her know that a lot of the blind community is not happy. I’m not happy, because I now must spend the time being told to buy a car to fix my problems by educating everyone that I am not in a position to buy a car and hire a driver. When you have a platform as powerful as Molly does, (several hundred thousand followers), sharing on behalf of an entire community is extremely important. Sharing on behalf of guide dog users everywhere is basically what you ask for when you get a guide dog. Molly, if you do find yourself ever reading this, please reach out. Let’s talk, and let’s talk about improving efforts for advocacy efforts.
I apologize if this post seemed a bit rambly, but this week has been one of constant advocacy left, right and center for myself. Advocacy, as I mentioned at the beginning, crosses to all aspects of my life. If you don’t believe me, I will post a screenshot of a message I received for my Geography class where the professor basically stated that if you had a disability that didn’t allow you to do group projects, you needed to find another class. (For those wondering, that’s against the law.) I handed over the information to all the appropriate academic officials, but the offense has none the less been sent and the prejudice spread to students who have not even had the chance to hit send on their accommodation letters.
I hope everyone finds a way to advocate for themselves and the rights of others, spreading kindness, understanding, and acceptance across all aspects of their lives. During this Coronavirus pandemic, please be kind and cognizant of the people who may be affected. Wash your hands, sanitize, and for crying out loud, PLEASE STOP BUYING ALL THE TOILET PAPER. Stay safe.