The year 2016 started with the “bathroom bill”, a piece of legislature passed in North Carolina, the state in which I live. When it was passed, rage exploded — not only in the LGBTQ community but from their allies as well. All of a sudden, everyone became extremely vested in the rights of the transgender community to be able to use the bathroom of their individual preference. During this tumultuous moment in time, I went out to eat at restaurants as I had always done. I met a group of friends, we ate, had some amazing conversations and simply enjoyed a really great time. After we ate and drank our beverages, I had to go to the bathroom. This is usually a normal occurence for any human body after enjoying an evening of food and drink. Yet it wasn’t. I rolled my wheelchair to the bathroom and realized it was locked. I looked up and saw a sign on a piece of paper taped to the door. It said that “Our Bathrooms are Gender Neutral.“ For a nondisabled, cis-gendered person, the fear of not being able to use a bathroom is generally not something you experience. However, I am a cis-gendered, disabled person. To be more specific, I am a cis-gendered person who had a spinal cord injury who no longer has control of my bladder and I really had to go to the bathroom. . . now. I looked around but did not see anything informing a disabled person whether or not the bathroom was accessible. So I rolled back to the cashier and said “Are your bathrooms accessible?” I got the blank stare I get from almost every person I ask the question “Is this accessible?” The guy at the desk continued to stare at me as if I was speaking a different language. I said it again but this time quickly followed the question with “You know there’s nothing on that bathroom that lets people know if it is accessible. Accessible bathrooms are actually the law.“ He stared some more, apparently unable to answer. The thought had never crossed his mind. I told him, “Give me the key and I’ll let you know if it is.” He handed me the keys and I went back and unlocked the door. Opening it, I was relieved to see it was. As I was peeing, I thought to myself, I am an ally of the LGBTQ community. I went to protests letting people know I did not want the trans-community to be oppressed this way. I think people should be to use able whatever bathroom they want. I believed in this right because a person who is trans may feel social pushback while using the bathroom with which they identify and I do not want anyone to feel this way. But in turn, if a bathroom is not accessible, I wouldn’t be able to use the bathroom at all. Is it somehow supposed to be socially acceptable that I would just have to be ok with peeing on myself? Because I’ve never seen the kind of outrage I saw at these protests when I, a disabled person, do not have access to a bathroom I need. If we get a bird’s eye view and observe how people are treated, you see that discrimination exists everywhere. As communities, when we want to protest against something that is wrong, access is never a thought. If we want to take part we are on our own.
Another event that happened in 2016 was the election of Donald Trump. The evening of that election, all of my nondisabled friends who are women, from different races, or identify as LGBTQ, were all in a absolute panic about how their rights were going to be taken away. As a brown-skinned, disabled woman, I was also concerned but told myself, Well this just means we have to protest harder and pay closer attention to what is really happening. As citizens, that’s just what we must do when something isn’t right. At the same time, I was also thinking of all the minorities who would have to fight for their rights, but somehow I didn’t immediately think about how my rights as a disabled person were going to be affected. The group of people I immediately thought of were those people in the Muslim community. Being a Hindu Indian, I know a lot of Muslim Indians and I began thinking about what could happen to their community. Since the hatred towards Muslims amped up after 9/11, it was not hard for me to imagine the potential for members of the Muslim population to be placed into camps like the Japanese were during WW2. When the Muslim ban happened, I was so happy to see the amount of people that came out to make sure this community’s rights were protected. I do not live in a city whose airport ever sees a large number of immigrants fly into America but I have friends that do, disabled and nondisabled alike. My disabled friends complained to me about how they were not able to participate in the rallies because people simply did not think about how to include disabled people. They found it disheartening when they could not participate fully in a cause that was so important to them, to this country as a whole. They felt excluded.
I experienced the same thing when everyone went out to protest for the Woman’s March in 2016. Downtown Asheville was packed. I was apprehensive to go because I wasn’t sure I could actually park and participate. It’s already hard to find an accessible spot downtown when nothing is happening, but when so many people are pouring into the city for a big event, my chances of finding a spot are more improbable. I really really wanted to go so I took the chance and drove there by myself. I kept telling myself if you can’t find a spot to park, just go home and look at the posts on social media later. The weather was alright for the most part but it sprinkled rain here and there. I found an accessible spot but like almost all the accessible street parking in Asheville, the landscape architecture did not make it accessible for me, a person with a wheelchair and van with a lift. I lowered myself down but I saw my lift was going to land half on the pavement and half on this 3 by 3 foot plot of land where a tree stood surrounded by soil. Because of the rain, I knew that I was most likely going to get stuck when I got back to my van to go home. I decided that I’d worry about it later because again this was something I really wanted to do. I wanted to join everyone to let our new president to know that we will not let him threaten our rights as Americans. Not just disabled people’s rights but everybody’s rights. So I got off the lift and rolled myself to the protest area. When I got there I was so disappointed to find that nobody thought that any disabled people were going to protest. Why? Because as usual disabled people are invisible to the world. There was no area designated for the disabled. People that took part in the protest didn’t even see I was there. It was as if I did not exist. It was as if nobody could even imagine that disabled people want to scream, shout, and chant for everyone’s rights. This lack of acknowledgement of the disabled also exists in the world of activism. Right after Donald Trump got elected a series of workshops became available to help people learn how to organize and be activists for whatever interested them. It was run by a group that fought for the rights of the Latinx communities but these workshops were not exclusive to that community. As usual, there was absolutely nothing about what the accessibility of these workshops was going to be. I called once to find out if I could even get in. No reply. I called twice. No reply. I called a third time. No reply. The fourth time, my call ended in a very stern message that went something like this: “Hey. I really want to take part in these workshops. I am disabled and I need to know about the accessibility of the venue. You do know that disabled people are the largest minority and we are also very interested in fighting for our rights. Please call me back to let me know.” It wasn’t until after that fourth call that a man finally responded. He apologized for taking so long, saying he was embarrassed that he and the organization had not thought about access for disability.
We are in the middle of a time where everyone is afraid for their rights. We really do need to all stick together. Unfortunately the nondisabled rarely understand how to include the disabled. It’s not really hard to figure out. Just ask and we will tell you. Even better, communicate by writing “This meeting is accessible” or by putting the universal graphic of disability that is recognized around the entire world informs that we can take part in this fight with you.
While I was really angry that I had to put all this time and energy to find out if I could be a part of the workshop, I also realized there are so many logistics grassroots groups need to think about, especially when so many are underfunded and understaffed. I can forgive people for forgetting but when we are robbed of our voice from being blocked to vote that is absolutely unacceptable.
In 2016 there were reported cases of accessible voting machines sitting in the corner unplugged and, well, inaccessible. In one instance, a person reported a flower wreath resting on an unplugged accessible voting booth, as if there were a funeral being held for her right to vote. Kathy Hoell, a 62 year-old woman from Nebraska with a brain injury who uses a wheelchair, has been prevented from voting for decades. Whether it was due to an inaccessible voting poll station, not being able to use the accessible voting booth because it was never turned on, or a voting poll worker making the decision that because of the way Kathy speaks, she was not smart enough to vote, she has repeatedly been denied access to her right to vote. Kathy wasn’t even given a literacy test like black voters were subjected to from 1890-1960. Instead, a unqualified voting poll worker assumed her intelligence based only from what they saw. These are the kind of ways 35 million disabled people are being blocked from having their voice heard in their own government every election. What people do not expect from the disabled community is for us to fight for our rights as people. According to Rutgers, Nebraska has the highest record of disabled voters to date: 70%. In comparison, only 48% of adults with disabilities have been able to vote in a state like New York.
It seems the way we interpret democracy now is that we cast our vote and our job is done. Or worse, those who see democracy as having the freedom to not participate decide not to vote at all and hope for the best? This is not really the way deomocracy works. As citizens in a democratic nation our work is never really done. We must protest, start petitions, speak out to our communities when our rights are being violated. This is something that Kathy Hoell understands very well. When her rights were violated, she said “I just go to the top and start yelling”. By working with elected government officials and fellow disabled citizens, she was able to have more of the disabled communities voice heard through voting. I think we can all agree that Kathy is smart enough to vote.
Like this ? Then
A Note To Spina Bifida:
Dear Spina Bifida, remember me? It’s John the infant you tried to kill 26 years ago.
Well let me give you a brief update, first and foremost, I’M NOT DEAD YET!
You did your best trying to make sure I never left the hospital or if I did leave, I’d be a vegetable in a bed the rest of my life, well joke’s on you buddy, I’ve written numerous articles, blogs and even a book about how you tried to destroy my life prematurely.
Let me say this one thing, YOU CAN’T TOUCH ME!
If I’ve said it once I’ve said it 26 times, PACK YOUR BAGS AND MOVE OUT!
Your eviction notice is taped to your door and you need to leave now.
This space has been overcrowded by your crap for 26 years and I say good day to you good sir.
You’re no longer welcome here, and if you choose to stay, I will just continue the fight to survive.
So you now have 2 options: LEAVE PEACEFULLY or prepare to step back in the ring for the next round.
The choice is yours.
Like this ? Then