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6. Miss Independent: What Does Independence Mean to Me?

In the blind community, we spend a lot of time discussing the benefits of having a guide dog or a white cane. We compare different screen readers and magnifiers. We ponder whether it's more efficient to read braille or large print. In all of these conversations, we're talking about tools that can help us become more independent in our daily lives. But what's interesting to me is that for all the conversations I've had about tips for gaining independence, I never really thought about how I define independence as a whole and how to set reasonable goals. Today I will be talking about developing a healthy mindset towards independence and asking for help. I will also be sharing some tips for sighted people when assisting a blind person. My name is Marissa Nissley and welcome back to another episode of Legally Blonde & Blind.

*Intro Music*

Hi everyone. Before we get started, I would like to make a quick disclaimer that in this episode, I'm sharing my personal experiences and opinions. These do not apply to every single blind person. Independence is a very important topic in the blind community, and it's often a very personal issue for people that require some degree of vulnerability to talk about. There's a lot of variation in what mindsets, techniques, and tools work best for people. So while I was writing this episode, I wanted to be sure that I would share my own experiences, but that I wasn't making any sweeping generalizations or universal statements. With that being said, let's get into it.

Like I said, in my intro, most of the time I have spent in IEP meetings or with O&M instructors or vision teachers has been devoted to discussing the very concrete and specific aspects of independence, thinking of questions, like, how am I going to get around the hallways at school? How am I going to read the whiteboard without any help? And while all of these conversations are important, I never really thought about independence holistically. I never thought, “What does a life where I have the control and agency I desire look like?” And I think this is for a variety of reasons.

First off, thinking of independence in this way is extremely abstract. And the answer to those types of questions is going to be different for every single person. These overarching life goals can be very difficult to create and communicate with others. I think another aspect of this too, especially when I was younger, is that having these conversations about what your life is going to look like as an adult seems very weird to do with the child. I think a lot of people would be surprised to know how early in life I thought about some of these things. I remember I was on a Disney trip. I was only eight or nine years old. And I remember thinking to myself at the airport, I was like, “how am I ever going to navigate this on my own?” The funny thing about this is, I don't think any eight or nine-year-old would be able to navigate an airport by themselves or live without their parents. That's a no-brainer, but what's different for an able-bodied child is that no one ever questions their ability to drive or go to work on their own or live in their own house when they're older. My guess would be that most kids that age wouldn't even think about it in the first place. But when you're a blind or VI child, you will hear people around you talking about it, whether it's at doctor's appointments or at parent-teacher conferences. So you start to think about these questions a lot earlier than most people initially.

Unfortunately, not knowing how to define and set realistic goals for independence led me to develop some toxic and unhealthy views. Firstly, I wondered whether being independent meant that I could never ask for help. I felt a lot of pressure to be perfect at all times when I was younger. And I figured that if I needed to ask for help with one thing people would assume I was incompetent in all areas of life. Simple things like asking my teacher where a stack of paper was because I couldn't see them put them down. It gave me so much anxiety because I not only thought that it would cast a negative shadow over me but the blind community as a whole. There is an article I found while researching for this episode and it was written by Ashley Wayne. And it was “what does independence mean in life with a disability?” If you Google the title, it'll be the first thing that pops up. I highly recommend giving it a read, but there was one quote I found in this article that I think really concisely explains this:

“I began to develop what I see now to be a rather unhealthy state of mind. I believed if I was not doing every activity well and independently as a blind person, that I was casting a shadow over all blind persons everywhere. I felt I had to be at the top of my game. So the sighted world would realize the blind people were just as competent in every facet of life.”

I have definitely felt this a lot throughout my life. And I think this translates also to academic pressure. This goes back to what Sam and I were talking about in Episode 4 “Spilling the Disabili-TEA” where knowing that some people will think you are less intelligent because of your disability can cause you to feel a lot of pressure to be this perfect star student at all times, just to prove them wrong. But obviously, this isn't a very healthy outlook because it causes you to think that everyone else is against you. It can be really easy to feel like you're representing the whole blind community because, in your hometown, you're probably the only one or one of the few with a visual impairment. And it's also really easy to fixate on those people who are ableists. But I found that ruminating on this and feeling as if I constantly need to prove myself does more harm than good for me.

Another aspect that has, and does still make me anxious about asking for help is the fear that my boundaries will not be respected. What I mean by this is that I fear that if I ask for help, once that people will not listen in the future, if I say no, I'm fine. And as a blind woman, there is a fear that your physical boundaries won't be respected, that people might grab you or guide you without you asking and not listen when you ask them to stop. Once again, it's really easy to focus on the people who are going to be condescending and who aren't going to respect your boundaries when you ask for help. But for every one of those people, there are dozens more who are willing to help you. But understand that you are a human being that can express their needs.

In addition to never feeling like I could never ask for help, another toxic way that I had thought about independence was that I almost imagined it as a ranking where someone could be either more or less independent, depending on how little sighted people were involved. For example, I used to think that someone who used public transit like the bus or the Metro. Was more independent than someone who used a sighted driver. And it's really silly because what's the difference between a blind person hiring a sighted driver and a sighted person, hopping into an Uber? You're getting to the same place. Doesn't really matter. I think this highlights how easy it can be to make this list of things you need to do in order to be considered independent. But what really matters is if you're getting what you need and you're getting where you need to go.

The final toxic mindset I had about independence was that it was either something you had, or you didn't, it was something that was achieved. You were either independent or you were not. Throughout most of my life. I had imagined this very clear progression where I would live at home until I was 18. And then I would go to college, live in a dorm, and then I would get an apartment, and then I would get a job. And that would be the only way I could achieve independence. That was the only path. But what threw a wrench into this pathway and caused me to rethink independence as a whole was the coronavirus pandemic, which made it so that I would be online for my first year of college. I felt a lot of anxiety at the beginning of the year because I was worried that I was falling behind and that I wasn't as independent as I had wanted to be at this point in my life. Last year, I had thought by this time I would have been living on my own, and been a lot more used to navigating DC and the Metro system. I had so many unrelenting expectations for myself. And all of those things would have been great if that could happen, but life just sometimes doesn't work there.

All of these roadblocks caused me to question whether independence should be thought of as something where it's black and white, you either have it, or you don't, you have to achieve it at a certain point in time, or you're going to fall behind, you never can ask anyone to help. Is that the healthiest way to look at it? Or is it more healthy to think of independence as a skill you can continue to build throughout your life? And that has no sharp deadlines? There aren't some lists of things that I need to achieve by a certain time in order to be independent. What I consider to be independence can change throughout my life and is only determined by me. I wanted to read another quote from that article I mentioned earlier, that sums up this point:

“I have come to see independence, not as a list of approved ways or means of doing tasks, but as a flexible system that can and should change depending on life circumstances, support networks and financial situations. The former definition can easily become so rigid that if you aren't getting through life, using a strict set of rules, then you're not really being independent. This latter understanding brought to me by motherhood among other experiences allows for a far less stressful life and a more positive view of myself and others.”

For the past several months I've been in this process of trying to be more mindful about how I'm thinking of independence and trying to recognize and debunk those toxic assumptions I just talked about. Like I said at the beginning of this episode, I'm trying to be as specific as possible and avoid generalizations. This is just my own personal experience. There are probably blind people out there who have never experienced these struggles before. For me, things like living on my own and being able to travel by myself. These are goals that are so important to me that if I don't check how I'm thinking about independence if I don't make sure I'm making realistic goals and being patient with myself, those toxic assumptions I just talked about can literally consume me. You may be thinking Marissa, “I have never struggled with these things before you just overthink everything” and honestly, fair point. But that article shows that there's at least one other blind person that has experienced these feelings, but my goal is just to share some tips that I could have really used when I was younger. And hopefully, some of you can relate to my points. Now, what are some concrete ways one can think about independence in a healthier and more realistic way?

The first change in mindset that helped me was acknowledging that asking for help from sighted people does not automatically make me less independent and is completely fine. I think generally in the blind community, we value independence so strongly that sometimes we can look down upon people or feel guilty if we have a sighted guide or ask for help from our sighted family members. The truth though, is that sometimes it's significantly more convenient to ask for sighted help. I feel like I always talk about my AirPods on this podcast because they are one of my biggest pet peeves. I dropped them all the time, but if I drop my air pods on the floor and I can't find it, I could either search on my hands and knees for like five minutes or if my dad's home, I can ask him for help and he can find it in like two seconds. There are of course instances when you're learning new mobility or daily living scale that you need to really do on your own, even if you struggle the first few times, and it takes you longer just as a part of the learning process. But I view asking someone to help me find an Air Pod or an earring as the equivalent of a sighted person asking someone to help them open a can they can't get, or someone asking to close the window if they're cold. In other words, everyone needs help. And it's not this binary where you either don't rely on sighted people at all or are completely dependent on them. Realizing that there is a sweet spot between those two and that it will change throughout my life, based on my needs, helps me feel a lot less guilty about asking for help. Putting my requests into context with what sighted people ask for help has also allowed me to think a lot more realistically about it. For example, I would feel bad if I couldn't find a bathroom or a meeting room at a conference by myself but sighted people ask things like, “oh, where's the ballroom?” all the time.

I also found it beneficial to assume positive intentions when sighted people tried to help me unless they proved otherwise. Now what I'm not trying to do here is excuse any condescending or disrespectful behavior. Sometimes when I tell people about how someone will raise the pitch of their voice when they're trying to help me or will grab me without asking, there'll be like, “oh, they were just being nice or, oh, they were just trying to help you,” which is true, but that doesn't make it right. Believe me. I know how much these things can sting. A negative encounter could put me in a bad mood for several hours, even after the encounter. The worst part about it is of course that the reason they're treating me that way is that they're making ableist assumptions about my competence and my ability to advocate for my own needs.

But I've learned that thinking that people are out to get you is not going to help at all. It's only going to make you angrier and cause you to read into things. As silly as it may sound, realizing that I have no obligation to prove myself at all times was extremely relieving. I sometimes have felt almost like a quote unquote ambassador for the blind community, because for a lot of sighted people I've met, I was the only blind person that they have ever interacted with. But let's say I trip in front of a sighted person who has never interacted with another blind individual. Are they automatically going to write off the entire blind community? Just because I tripped. Probably not. And even if they do, is it really worth exerting my energy thinking about that?

Now, these two changes in mindset may sound like exact opposites, but I think they're equally important for developing a more healthy view of independence. Firstly, acknowledge that you are the most qualified person to determine what you need. And you should only use things because you want to. Not every blind person uses a cane or uses a guide dog or reads braille and uses a screen reader. There is no one set list of devices or skills you have to learn just because you have a visual impairment. There are so many people in the blind community who can give amazing advice about what worked best for them. And it's great to listen to their perspectives, but ultimately, you know what works for you better than anyone else.

I think the biggest example in my life of this was wearing glasses because it seems pretty intuitive, right? Like if you have a visual impairment, you wear glasses. But what's interesting is that a lot of people with albinism actually don't wear glasses because we find that it doesn't make enough of a difference for us to wear them full-time. I'll wear them if I'm playing a board game or if I'm at a museum, because it makes things a little bit more detailed, but it's not like you can read text on a screen or read the whiteboard when you have your glasses on. I don't know if my mom remembers this, but one time after we had gotten glasses, I hadn't worn them for a while. I think this was like in middle school and after we had gotten them, my mom and I were in the car and she's like, “Marissa, read the street sign.” And I just sat there in utter disbelief. And I was like, “I hate to disappoint, but that's not happening.” These glasses are not magical. They didn't make that much of a difference in my vision and what actually caused headaches. Sometimes I expressed, and I think like third or fourth grade that I didn't really want to wear them full time because it wasn't helping me. At first, my parents and teachers thought it was a fashion concern. Honestly, I don't blame them. I was a very style-conscious child. However, I'm very glad that they let me take a shot at it. And I realized that it was a lot easier for me, especially because my prescriptions were so strong that I wouldn't be able to read with my glasses on. Like I'd have to look over them. And that just got really annoying after a while.

The point is I don't have to wear glasses just because sighted people think that's what everyone with a visual impairment should be doing. There's actually been a few instances where people have come up to me while I'm reading something on my phone. And they'll say to me, “you're going to hurt your eyes. You're looking too close at your phone. You need glasses.” But I happily explain to them that it doesn't help me and therefore I don't need to use them.

However, at the same time, one should also acknowledge that what they need throughout their life is probably going to change. And as a result, it doesn't hurt to approach new devices and methods with an open mind. I am an extremely stubborn person. So I feel like my family is going to get a kick out of this. I'm very set in my ways when it comes to mobility, I like using my iPhone, my Apple Watch, my iPad, my monocular. And that's it. One thing is that portability is super important to me. So if someone's trying to show me like a new device and it weighs more than 10 pounds, it's an automatic no.

However, I have started to acknowledge and am still working on the fact that since I'm starting the transition to college in a few months, and I'm going to be living on my own for the first time, things are going to be different and therefore it might not hurt to get cane training just in case. I resisted the cane training for years, I felt that everything was fine and that I didn't need it. And that my vision was too good for it. But earlier this year, I went to a haunted house with my friends and it was basically in this dark field. And the only light was these orange street lights. I don't know if it's just me, but I find it hardest to see when there's like a sharp contrast between being really bright and really dark. For example, if you're in a restaurant and all of the lights are off, it's fairly dark inside, but then they have all of the windows open. So you're getting this bright light coming at you. Anyways, we were standing in line with these streetlights and it was so bright and it was giving me a huge headache. And then we go into this haunted walkthrough, that's pitch black, and all of these actors are jumping out at me. And the only thing that was helping me navigate through this haunted house with like these little string lights that were at the bottom of the floor, just trying to tell you where to go. And at that moment, I thought to myself, “I can't see anything.” So as this guy's jumping out at me with a fake chainsaw, I think to myself, “it might not hurt to get cane training.” Even if I only use it once every few months, it's still better to have it than to be in another situation where you have the terrifying realization that you can't see anything. I know this is such a tangent, but this story has to be shared. I went through with one of my best friends. I've known her since preschool. One of the people jumps out at us and she runs away. I'm just standing there because remember, I can't see anything. So I have no idea where to go. And I'm like, “oh, well, I, I guess it's just me now,” but she came back for me. And that's how, you know, you have a true friend.

All in all being open-minded helps a lot more than it hurts. My final change in mindset was to avoid one true way. I think this can happen in any community. And I think it comes from a good place, but the truth is that there is no one best way to live and navigate as a blind person. I think this happens because blind people are so excited to share what worked best for them and to help others out that their suggestions sound like they're implying that it's the best way for all blind people. Like I was saying in the last segment, not every blind person uses a long white cane or uses a guide dog or reads Braille. There isn't one set way to be a blind person. I think it's not only important to identify when other people are doing this and acknowledge that I don't have to do every single thing they say, but also to take accountability and recognize moments where you're being judgmental. For example, one thing I have been rather judgmental about in the past is when vision teachers or parents get their student a CCTV, which is this, it's basically like this huge computer, right? And it has this big camera and you place paper underneath it. And then on the screen, it'll show the page or whatever you have under the screen in large part. Now, I had one when I was a child, but this was before the era of iPhones, iPads, and better portable magnifiers. So now when parents get their kids one of these, it makes no sense to me because you can't take it anywhere. However, when I see posts about it on a Facebook group, I try my best, not to immediately jump to that judgment. That child may really like their CCTV. And if they like it and it works for them, who am I to judge? I think at times this can be very similar to mom-shaming or parent judging because we're so passionate about helping other blind people out, especially people that are younger than us, that we forget everyone's different. Overall. I feel that checking these initial judgements and assumptions I was making helped me realize that independence looks different for everyone and that it's not this black and white.

Finally, I wanted to devote a section of this episode to advice for sighted people when they're helping someone who is blind. I was talking at the beginning of this episode about some reasons why I feel anxious asking for help. And I think if a sighted person has the opportunity to help someone who is blind incorporating these pieces of advice will make it a more positive experience for both parties and will help alleviate future anxiety. Some of these may be obvious to you, but I'm sure many blind people have at least one story where someone who is trying to help them didn't follow one of these pieces of advice. So I still feel a need to share them.

Firstly, a blind person may need help in ways that you don't realize. I was talking a bit about this in Virtual Learning with a Visual Impairment about the dividers or the social distancing markers. You may not think that a person can't see the sticker on the floor or can't see the clock on that. So generally, if someone asks you a question, like, “what time is it” or “where's the bathroom” and it's right next to you, even if it's a stupid question, respond kindly. Don't say things like “time for you to get a watch” or “it's right there.” Because that is not helpful.

Secondly, if a blind person asks you for help speaking to them, like a normal human being, most sighted people would probably think, “oh yeah, I already do this,” but I would challenge you to keep in mind how you're addressing them and how you're speaking to them. Are you raising the pitch of your voice? Are you using a more simplistic vocabulary? Are you speaking slower to them? These are often subconscious things that you probably don't even realize you're doing, but trust me, if you're helping a blind person, they're going to notice.

If you see a blind person and you think they need help, like if they drop something or if they're searching for something, ask them if they need help. Only once. If they say no, leave them alone. You may think you're being nice by insisting on helping them anyway. But to that blind person, you're basically saying to them, “I don't think you know what you need or what you want.” And that's not only incredibly hurtful, but it makes it 10 times harder for me to ask for help in the future.

Going along with that, ask for consent whenever you touch a blind person. Unless they are literally about to walk into busy traffic, do not ever grab a blind person without asking first. I've heard stories of this happening a lot at Metro stations or train stations because if someone has a cane or a guide dog, people are afraid that they're going to walk right into the tracks, but 99.9% of the time, they know what they're doing. They have received O&M training and they know not to walk right into the tracks. I cannot stress this enough, but like I was saying with listening, when they say no to asking for help, dragging or forcefully guiding a blind person, tells them that you don't think they know what they need or want. It also can be really startling, especially if they don't see it coming. I was on a school trip once and we were late for a flight and my teacher grabbed me by the arm and started dragging me through the airport because we had to run to get to the terminal. The story is funny in hindsight, but at the time being dragged through the Orlando international airport at 5:30 in the morning, without any coffee was traumatizing. It took everything in my power not to tell this teacher off.

Next, when you're helping a blind person do not ever say the dreaded word, “It's over there.” Most of us need very specific directions. Is it to the left? Is it to the right? Is it on a table? If so, which table is it on? Just please try to be as specific and patient as possible because sometimes something can be right in front of me, but it still takes a minute for me to see it. It's not me being lazy or “not looking.” It's just that scanning and trying to find something usually takes more time.

My final piece of advice is don't act like a savior just because you help a blind person. Don't brag to your family and friends that you did a good deed or expect them to treat you like you're some sort of hero. You don't want to spread the idea that blind people need to be constantly helped or saved. You don't want to make it seem like you're only interacting or helping a blind person just to make yourself feel better.

Whenever I ask for help. I would say at least 80% of the time people follow these rules, they're respectful. They ask questions. They don't make assumptions. I know how easy it can be for me to assume that every time I ask for help, it's going to be a negative experience. And I don't want another blind person after reading this list to dwell on that. Because most of the time, these things don't happen. However, I think that for any sighted person deliberately thinking about these tips, even if you already follow most of them, will help you be more useful for a blind person when they need assistance and we'll make it a more positive experience.

Well, everyone, that is all I have for today. I hope you enjoyed this episode and could relate to some aspects of it. As I'm sure you could tell, this was something I was particularly passionate about writing, researching, and talking about. So I hope it wasn't too long. If you liked this episode of Legally Blonde & Blind, make sure to subscribe on Spotify, Apple Podcasts, or wherever you get your podcasts. You can also follow my social media pages @legallybb_ on Instagram and Legally Blonde & Blind on Facebook.

Thank you again for listening and I hope to SEE you soon!


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