Thoughts On Advocacy, And Bad Weather

[chelseajmunoz]

When I wrote my last blog entry Sunday I forgot to write about what the TV show Once Upon a Time is about. The show is about the different characters that are in fairy tales. However the show is based on today's times in the actual world. So the characters in Once Upon a Time mention things like Skype, the internet and cabs. In addition to the fairy tales being set like they're in today's world the writers of Once Upon a Time write parts of each fairy tale so that there are all kinds of twists and turns in each story. I wish there was audio description for every single show or movie that existed because having someone narrate movies so that blind people know what's happening in movies, really helps him or her know what's going on. In my opinion there's a lot that we as blind people miss out on when movies are not narrated. In fact I just saw the movie Cocoa this Sunday with some friends. There were definitely parts of the movie where I was unaware of what was going on because I'm not literally a visual person. If the movie had been audio described though I'm certain that I would've gotten much more out of the movie. To try and explain what I mean by audio description: when a movie is narrated, the narrator mentions details such as that someone has an angry face, is hunched over, is staring off in the distance ETC. Those things are seemingly small things but all of those things are details that most sighted people leave out when they watch movies or shows with people who are blind. Since I wrote my last blog entry on Sunday I've texted back and forth with the lady who works for the company who hires assistants to help people who need help with things in his or her home. It turned out that there was indeed bad weather starting yesterday morning, just as the lady had warned me there would be. Then yesterday evening she texted me saying that she and my assistant would come to my apartment as soon as the weather permitted the two of them to do so. The reason the lady who works for the hiring company has to come to my apartment is because she has to fill out paperwork that my assistant and I also have to sign saying that we both agree to these services. Ironically though most businesses that exist don't provide blind people the necessary paperwork in a format he or she can read. Most businesses give those of us who are blind print paperwork because to them it's okay for us to have someone fill things out for us. They likely don't even consider the fact that having someone fill out paperwork for us means that our privacy is being violated (whether it's paperwork from a doctor's office concerning a person's mental health issues, paperwork from state agencies that help disabled people get jobs or go to school or paperwork from potential employers that needs to be filled out for one reason or another). I understand that part of the reason many sighted people likely don't think of the fact it's a privacy violation for blind people to have paperwork filled out for him or her is because blindness is not something that many sighted people ever deal with. Period. So how can anyone face something when they don't know that something is a real thing that happens more than disabled people would like to admit? I was talking with a friend about this last night: the fact that the reason our lives are more difficult is because many of us who are disabled choose to speak up when paperwork is not accessible to us, we choose to speak up when businesses are not accessible for people who have mobility impairments, we speak up when websites that we need to use or would like to use are not accessible to us, we speak up when we feel violated or wronged by someone in some way...and after years of being strong self-advocates for ourselves and others we begin to feel tired. Not tired in the sense that we want to give up and throw in the towel but tired because sometimes there's just no way of knowing if your advocacy is making a difference or sinking into anyone with the power to change things for the better. I'm not using I statements this time only because I have friends who have written about these same things on Facebook: those friends of mine have written about going through these same struggles and written about getting tired that they have to fight these types of issues on a daily basis. The thing is though if we as people who are disabled didn't fight these issues regularly we wouldn't have as great a quality-of-life as we do because we fight for the things we believe in and the things that are our right to have as fellow human beings. Because as I've said before we live in a world that is not built with wheelchair users, blind people or other disabled people in mind. Yet if we as disabled people stayed silent about how we felt and what we know we need, we'd be left behind in the movement of the world. That wouldn't just apply to disabled people though. It could be said that anyone who doesn't learn about the latest technology or chooses not to speak up about what he or she needs will be left behind because the world never stops making progress. In fact someone asked me just last week if I'd always been this self-sufficient person that I am now. My answer was "no" partly because my becoming self-sufficient was out of necessity. I had to become self-sufficient and resourceful because many of my family members did not care for me in healthy or helpful ways. So through many family members neglecting me and sheltering me I realized even as a little girl that I'd need to find ways to make my life happy. Although I wasn't able to move out of my mom's house until I was 21-years-old, going to the Louisiana Center for the Blind truly saved my life. As I've written about in blog entries before, when I was an LCB student I was able to learn how to clean, manage bills that I paid and the staff members who worked there showed me that I was an adult who had the right to make choices about the things that happened in my life. Before attending the LCB though I had no earthly idea how I'd successfully manage being an adult. The thing is though, no one (whether sighted or blind) knows everything about how to be an adult when he or she turns 18-years-old. There's no manual for people to read instructing him or her on what to do and what not to do and no one magically has new abilities or wisdom just because he or she has turned 18-years-old. And because of the circumstances that were part of my package, I had to have people show me how to be an adult. While others may read that phrase and think "Man that sucks" I can honestly say that I wouldn't change any part of my life's happenings. Through going to therapy I'm learning that I can embrace every part of my story, the good parts, the bad parts and the ugly parts. It's all part of what makes me who I am. So going back to advocacy: advocacy is a gift that I personally have chosen to take advantage of because the rewards that I get in return of feeling empowered and sometimes getting exactly what I need or what others need, far outweighs the initial frustration that regularly comes with the territory. Choosing to participate in advocacy gives me a sense of accomplishment and contributes to my self-worth in a hugely positive way. And for the record I'm writing these things down for myself as much as I'm writing them down for anyone else. Because sometimes I just feel shitty about choosing advocacy because my needs or other people's needs go unmet, I feel unheard and sometimes I'm just too fucking tired that day because someone has tested my patients and reached the limit of what I can take that day. Yet most times I choose advocacy because as I said, when I choose advocacy, I'm in turn choosing happiness because for the most part, people want to help and they want to understand what one's needs are. Speaking of choosing advocacy: tonight I reached out to the people at Apple who create Apple's training materials since I have yet to hear from them about how they could help me resolve what I believe to be accessibility issues with the AppleCare Technician Training. But honestly it was hard for me to reach out to them because lately I find myself getting frustrated about the fact I'm running into difficulty. Combine that with the fact that right now I have no way of knowing what the hell is really going on. Like, am I running into difficulty because VoiceOver cannot read graphical images or pretty-looking text that are possibly both on the screen? Or am I running into difficulty for another reason entirely? On another note I texted one of the therapists who runs the trauma group I'm in to ask her if we'd have group therapy this week. She texted me back a few minutes later saying that group would be canceled this week if I'd be available to meet next week. So I told her I would be available next week. Since my assistant and my Supervisor at the company who hired my assistant also don't know when the weather will cooperate and allow people to take care of the things that he or she needs to take care of, our meeting is on hold too. Thanks Mr. Bad-Weather, you are not welcome here!