The Person Who Treated Me Worst Because of My Disability

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Life is a state of constant change. Even when we don’t know it, things around us in life are always changing. Circumstances, relationships, moods. Humans can be incredibly temperamental, but we’re also habitual. As a child, we’ll touch a stove twice even though it burned us the first time, and we still do it as adults. We keep toxic people in our lives, we do things that are unhealthy for our bodies, and possibly worst of all, we consistently stay in mindsets that hold us back from being happy. These kinds of behaviors can be really difficult to change, because sometimes we don’t realize that we can be our own worst enemy.

I have been treated poorly by people in my life, but two years ago I experienced the worst treatment I have ever known. The perpetrator was a person I knew better than anyone, the person I should be able to trust the most.

It was me.

Of all the times “friends” have walked all over me, partners mistreated me, and strangers have been incredibly rude to me, none of it compares to the way I treated myself. I wanted others to accept me for my disability and who I was, but I was more harsh and ignorant toward myself than any of my peers.

If I had one kind person in my life during those times, I may have never gotten to the dark place that I found myself in. I could have, and should have, been that person for myself. Instead I dissected all my mistakes and punished myself every day, mostly for things I had absolutely no control over.

I know I’m not the only person with a medical condition who has done this. But the best decision I ever made was to recognize that I’m not a mistake. I work hard — sometimes harder than most people — through disability and the depression and anxiety that come with it. Now I’m building a future for myself. I used to be ashamed to have a visual impairment. Now, I’m proud to be exactly who I am, and I love the way it feels.

In my head, I have a reverse mirror of Erised. I look into it and see all the things I used to be, and I compare it to who I have become. I’ve learned it’s important to stay humble, but don’t forget to give yourself credit for the changes you have made. Treat yourself the way you want others to treat you, and never accept less respect than you give.

Follow this journey on The Blink Butterfly.

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The Stigma My Blind Son Faces, And What I Decided to Do About It

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My son Campbell is smart, curious, personable — and blind. Despite his long list of assets, his blindness is what society sees first.

Soon after Campbell was born, I realized something was different. I found out he was blind after I noticed he wasn’t responding to visual cues. Ever since, for the past 23 years, I have been studying society’s impressions of him. Even when he was a baby, people wouldn’t know how to act around him — that reaction has only become more pronounced over the years.

When Campbell was only 18 months old, we went on our regular grocery shopping trip. His hands gripped the handle of the cart and his chubby legs threaded through the front slots. Aside from his darting eyes and special blue glasses, he looked like a “normal,” happy toddler. I stood a few steps away as I enjoyed the sight of a young girl giggling and trying to catch his attention. She smiled and cooed at him and he responded in kind.

Suddenly, the girl’s mother made a beeline to us, scooped her daughter up and said, “Honey, leave that boy alone. There’s something wrong with him.” She shot a sympathetic glance my way and scooted off. I stood there, not knowing if I felt worse for my son, whom I later decided was too young to care about the slight — or for her child, who was being raised by a parent with such a closed mind. This was a seminal moment. I knew I had to do something.

The first thing we did, as a family, was to move to Massachusetts so Campbell could attend Perkins School for the Blind, the same place that taught Helen Keller. It was not until he was completing high school there that we began to see the greater challenge ahead: life in the real world.

Campbell was accepted as the first blind student in a two-year university program specializing in working with young adults with mild cognitive issues and various special needs. But a few weeks into his first semester, I learned he was not being assigned homework or receiving classroom handouts.

I called his teacher to ask why he wasn’t getting materials. She responded, “I don’t know Braille, and he can’t read print. How he can do homework?” When I asked how the other students do it, she told me she emails the assignments and they send their work back. In response, I gave her his email address. I explained that not only does he have a screen reader to interpret email and websites, but he also has the ability to complete homework in Braille and send it back in print.

She made an assumption about Campbell’s abilities. And it’s these types of assumptions that prevent those who are blind from full inclusion.

Campbell has also faced discrimination in everyday social situations. During a recent visit to Miami, Campbell was excited to take a family friend out for a drink for her 21st birthday. They sat together at a swanky bar, his white cane folded by his feet, and he proudly ordered two glasses of champagne. Per usual, they both showed the bartender their IDs, showing they were of a legal age to drink.

As they were toasting, the restaurant manager, who had been watching from afar, rushed over to me. As he tapped his pointer finger into my arm, he demanded to see Campbell’s ID. Startled, I told him Campbell had just shown it to the bartender. He didn’t care. As I began to protest, Campbell patted my hand, saying it was OK, and handed over his ID. The manager studied the picture, said his ID was fine and walked away, but not before I told him that, “He can hear just fine — next time you need something from someone who is blind, you need to ask him.”

For Campbell’s whole life, I’ve been wondering how to change society’s perceptions of the blind. I knew it would take a major effort. This is why I’ve been working to launch BlindNewWorld, a social change campaign to disrupt stereotypes and inspire the sighted population to see the full potential of people who are blind.

In a recent study by Perkins, more than half of respondents reported they haven’t seen a person who is blind in the past year. But there are 7 million people in the U.S. who are blind or visually impaired. So I believe those who are blind have been marginalized to the point of invisibility. And because there is so little interaction between the blind and the sighted, fear, pity, stigma and discomfort rule the day. This needs to change.

At a time when there is so much social change happening, and technology is providing those who are blind with more opportunities to engage in the sighted world, I believe we can change the statistics and make blind inclusion second nature. Not just so my son can have the social, professional and academic opportunities he deserves, but so that everyone can.

Corinne Grousbeck is chair of Perkins School for the Blind. Follow the campaign @BlindNewWorld on Twitter.

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12 Ways to Make Universities More Inclusive for the Blind

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Here are 12 ways universities can make their campuses more inclusive to the blind. It’s based off of what I have personally observed and experienced at my university.

1. Braille labels.

It’s imperative that universities put braille labels on classrooms, offices, mailboxes, etc. At my university, braille isn’t everywhere. The other day while I was trying to find a class, I was feeling the wall to try and see if the room number was marked in braille only to find out that it was not.

Braille is how blind people like myself navigate the world. It’s our way of reading something, and yet, the importance of it is still not recognized, nor is it respected.

2. Electronic course evaluations.

The only time an electronic course evaluation has been used at my university is for online classes. All course evaluations need to be distributed electronically to students at all universities. It becomes really awkward when I have something to say about a professor or teaching assistant and have to get someone else to fill it out. Really, that’s something I should be able to do confidentially myself.

3. Make textbooks lists available earlier.

Up until this year, the textbook lists at my university didn’t come out until approximately two weeks (if that) before classes started. But this year, the textbook lists came out at the very beginning of August. This is a very big deal. It help gives someone who is blind more time to get their textbooks in an electronic format through the accessibility/disability/development center.

I have mentioned this a few times throughout my years at my university to a couple of individuals, so it’s nice to be able to witness the improvement, and I think all universities need to follow suit.

4. The contrast of stairs.

Most people who are blind or have low vision use a mobility aid (I use a guide dog), so this really isn’t an issue. But I’m mentioning this for those who may have a bit of useable vision.

I know this was helpful when I was little and could see stairs. Having stairs that are either light on dark or dark on light is helpful for people with low vision because it provides some contrast in identifying steps.

I’ve been told by a friend that my university has contrast stairs in at least one building, but I wouldn’t be able to tell otherwise or know of any others. It’s just something for universities to think about when designing new buildings.

5. An accessibility reporting system.

I think all universities should have a reporting system that enables anyone to report an accessibility concern or issue quickly and easily. I also think that feedback should be given with regards to the status of that concern or issue.

To me, that puts greater accountability on the universities to attend to it, such as a broken elevator. I understand things won’t be fixed instantly or there may be some cases where nothing can be done, but nevertheless, a reporting system would enable any accessibility concerns or issues to be directed at the appropriate contact to have them addressed.

6. Provide descriptions for videos used in classes.

This. Is. A. Problem. Universities, in all aspects, need to plan an activity and assume that there will be people with disabilities involved. This includes professors and lectures.

My professors, for the most part, have been pretty good regarding videos. A professor in my first year, without being asked, went “above and beyond” in a sense by emailing video descriptions to me beforehand.

Then, in my second year, we had to watch a video in a different language, so it had subtitles and was rather lengthy. My professor sent it to my university’s student development center to have it transcribed into a document. It worked out fine. This is what all professors should be doing, not only for the blind but for the deaf, too.

If the video has good narration, it really shouldn’t be an issue from the blind standpoint. However, chances are your university’s student development center can provide guidance on descriptive video options (if there are any available for the said film) and transcribe it if it’s in a foreign language.

7. Student development centers need social media accounts.

Universities’ student development centers should really have a social media presence. My university’s student development center does not have a Facebook or Twitter page. To me, this is very problematic since all other university departments and associations do.

Instead, they get in touch with us via email or our online learning site. This is totally outdated, and I think if they expanded themselves on social media, more people would know of their existence and their services. Additionally, they would be able to reach out to more people and obtain greater feedback that way.

8. Mentorship programs through the student development center.

It would be good, especially for first-year students, to be mentored by other students who use the center. That way, they will get guidance and learn about the center’s services from someone who has had experience and is in a similar situation as them.

9. Accessible interactions.

Professors and teaching assistants, it gets really awkward when you don’t know my name or take no effort in learning it, especially when I always take the initiative to introduce myself. When you don’t, things tend to go a lot like this when you ask the class a question and I raise my hand:

Professor: “Yes?”

Silence.

Professor: “Yes?

Me: (Thinking, “OK, yes. They probably meant me.”)

For some awkward reason, the second time an individual says “yes,” their voice always tends to go up an octave — or five — as if its my hearing that’s the problem, not my vision.

It’s our responsibility as students who are blind and visually impaired to tell our professors and teaching assistants our names, but it’s their responsibility to remember it.

Also, all university employees need to learn how to properly assist a blind person. What I mean by this is all university employees need to learn an assistive technique called “sighted guide.”

To my knowledge, this isn’t taught at my university during any accessibility training they receive. As a result, I’ve been “guided” when I didn’t even require assistance in the first place by people putting their hands on my back/backpack and “steering” me. Unacceptable.

Instead, the blind person actually takes the sighted guide’s elbow will then walk slightly behind you, so you can then “guide” them.

10. Location of the student development center.

I really like where my university’s student development center is. While it’s on the fourth floor of a building, there is more than one elevator that can be used to reach it. Once you get off the elevator, you have to walk a few feet, turn and you’re there. It’s very straightforward.

This may not be the case at other universities. It’s important to make sure students feel their center for disability and accessibility services is really “accessible” in a physical sense. If there’s only one elevator to reach it or if it’s in a complicated or hidden location within a building, then chances are it’s not.

11. Volunteers at social events.

My university has some pretty big social events. These tend to be primarily run by our students’ union. However, these really big events could be creating barriers for people with disabilities.

For example, my university has a vendor fair where a bunch of on-campus clubs, businesses and services at the university set up tables for students in a specific location for students to browse through at their leisure. It could really deter a new student who may have a disability from attending due to accessibility reasons. Having a couple of volunteers there to strictly help students with navigation and describing booths would be very helpful.

Not being able to participate in these events can be a big barrier in getting involved around the university. When I’ve been to events like vendor fair, I’ve had to ask each individual about their booth, which is fine for someone like me who is outgoing, but maybe not for others.

12. Accessible computer software.

Universities need to make sure all of the computers that they have available for campus-wide use have accessibility programs pre-installed. For Windows computers, this would mean, to my knowledge, Jaws and ZoomText. I strongly recommend that universities invest in Apple Mac computers, which have all accessibility features already installed, including a screen reader called VoiceOver and a very good zoom feature (speaking from experience).

Lead photo source: Thinkstock Images

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5 Things Children of Parents With Disabilities Understand About Life

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People often ask me how I ended up with such amazing kids. “What did you do,” they ask, “to end up with such sweet, easy-going kids?” I’m not saying this to brag, and my girls do have their moments of misbehavior like any other kid. But I do feel like they’re pretty remarkable. And I don’t think it’s anything I did. I do have a hunch, however, that growing up with a mom who doesn’t see like other moms has something to do with it.

I think they, like many children who have a parent with a disability, understand certain things about life that other kids their age may not yet get.

I recently asked my daughters, ages 10 and 6, what those things are, and here’s what we came up with:

1. Sometimes you have to take the long way.  

Whether waiting for a late bus or lost Uber, my kids know that we sometimes have to leave an hour before we need to be somewhere that most parents can drive to in 10 minutes. They also know that we need to allow time to relieve, water and harness Mommy’s guide dog. On Mondays we walk to my younger daughter’s gymnastics class, which is about a 30-minute walk and a 5-minute drive. Sometimes when we’re halfway home after class, my daughter hangs her head dramatically and says, “I bet all the other kids are already home eating dinner by now!” And I say, “Yes, I bet they are.” (And sometimes I add something about those kids not getting the good exercise she’s getting by walking!)

woman and two girls stand on steps with guide dog
Joy, her two daughters and her guide dog

2. Kids can do a lot of stuff.  

Children are often more capable than many adults think. Whether we like it or not, children of parents with disabilities often end up lending a hand (or foot or ear or eye) to their moms and dads. Inadvertently, they often end up learning how to do certain things that typically parents do. My 10-year-old, for example, has become a pro at pinning our location when we order an Uber, as this is often difficult for me, even with zooming or using the voiceover on my phone.

While I try my best to make sure my kids get to be kids and aren’t expected to do adult tasks, I am often surprised at how willingly and capably they do things that many people would underestimate their child’s ability to do, such as reading labels on food packaging and learning bus routes. I don’t love the fact that I often have my daughters check over my makeup in the morning, but when we’re running out the door and there’s no one else to ask, they’re my go-to girls. And really, I don’t think there’s much harm in having to tell your mom her eyeshadow is uneven.

3. Life isn’t always fair. 

Sometimes you try your best, and you still end up last. It doesn’t make sense why some moms can walk and some can’t, why some dads can see and other can’t, or why some moms can’t get out of bed in the morning. Sometimes life just isn’t fair. It can be a tough lesson to learn, but one that leaves kids very much in touch with reality.

4. You can’t judge a book by its cover. 

When my girls see someone with a cane or any kind of assistive device, they understand that’s only a little piece of that person. They know it doesn’t mean the person is incapable. They also know physical disabilities don’t necessarily correlate with mental ones. And most importantly, that any disability, whether physical or mental or emotional, does not affect a person’s ability to do good in the world.

5. Flexibility is the key to most everything. 

Over the years, my girls have probably ridden in more modes of transportation than anyone their age — or my age. Between friends and family’s cars, neighbors’ minivans, Ubers, Lyfts, taxis, busses, trains, planes and boats, they have had to figure out a million seat belts and seat configurations, wedging themselves wherever they will safely fit. They have waited outside for late busses for over an hour, been late to activities even though they themselves were ready on time, and changed vehicles at the last minute. They know waiting, and they know change, and they have the ability to be flexible.

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7 Challenges I Face as a Blind University Student

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As I go into my fourth year at Brock University come September, I think it’s important that my sighted peers know and understand what it’s really like to be a university student who happens to be blind. Here are 7 challenges I face on a regular basis, and how they could be solved.

1. People who close doors on my guide dog. Yes, you read that right, and it happens all the time — usually because people aren’t paying attention, or because they are afraid of my highly trained and qualified guide dog who would never harm anyone. My issue isn’t that you’ve decided not to hold open the door for me — that’s fine, but letting the door close on my dog is not. Since Izzy’s job is to prevent me from getting hit by any obstacle (which, yes, includes doors) she generally walks a little bit ahead of me in the harness to lead me around the obstacles. So if a door closes on us, it really closes on her. This can lead to her feeling anxiety or uncertainty when confronted with doors on harness. Either hold the door, or don’t and be mindful of when you close it. Plain and simple.

2. The barriers that arise in social situations. Looking back on my first and second years especially, this one really hurts. For some reason, people seem to think that when they are out and about with a blind person, they are the ones responsible for that person. Well, I’m here to kindly remind you that this is not the case. I am responsible for myself, and I am perfectly capable of being responsible for myself.

During my first year, I was basically told by an individual on my floor that I wasn’t welcome to go to the party with them because I was a burden. The party my entire floor was going to was off-campus, but I was reassured that they’d take me to one that was on-campus instead. Of course they never did.

People would rather assume they know what I can or can not do, regardless of what I tell them and before they get to know me. But facing “difference” with discomfort will not make you a well-educated and well-rounded person.

Now that I have a couple of close friends who could care less if I’m blind and who, it is clear, treat me as an equal and as their friend, this issue isn’t as prominent in my life. But that doesn’t make it any less important. All those people in my first two years of university missed out on getting to know me. I thought at the time that I had missed out too, but it turns out, I haven’t missed out on anything, because now I’ve found friends who are true and lifelong ones. If you’re blind and experiencing this, hang in there, you’ll find the right people eventually, too.

3. You knowing me, but me not knowing you. Nearly everyone at my university “knows me”. Whether it be because of what I do with A.B.L.E., the student club I founded, or because I’m the girl with the dog, people seem to know me and want to say “hi” to me. It’s great that you “know” me, but tell me who you are so that I can learn to associate your voice with your name and say “hi” back because I’ll know who you are too. I understand with a quick friendly hello you’re not going to say your name, but most of the time, please make an effort to say it.

4. Disrespect towards my guide dog and I. Let me clarify, I am not referring to a situation where a person approaches me to ask a question about my guide dog, or my visual impairment. I am referring to those people who do not announce themselves and just start petting, talking to, and/or taking pictures of my guide dog without my knowledge or permission. Remember, always ask! It is important that when Izzy’s harness is on you give her respect as a working guide dog, and me respect as her handler. Remember, your actions could put my life in serious danger. So when you see Izzy, do not pet her, talk to her, feed her, take pictures of her etc. It is very difficult to have to tell people to stop, and it’s not a task I enjoy doing.

5. Formatting assignments. Everyone knows the assignment format that professors seem to generally want: double spaced, size 12, Times New Roman font and something to do with the margins that I’ve never understood because, well, I can’t see the margins. It also gets really tricky when I print an assignment out and there are blank pages amidst the assignment, or a page that isn’t facing the right way when all of the others are, etc. My rule is that it’s my job to edit my work to the best of my ability, not rely on a friend. For those of you who might be in the same position, here are my strategies.

When I print my work, I always go to my university’s library to have it stapled.That way, they will be able to remove blank pages and put the pages in order for me. If it’s an assignment I’m submitting online I find that Pages (the program that I use to do my work) is horrible for screwing up the formatting when viewed on others’ computers, so I have gotten into the habit of submitting assignments as PDFs. All of my professors are also required to give me word counts as opposed to page counts since my computer will verbally tell me I am on a given page, but not how far down on that page. It’s challenging because sometimes formatting can be very visual and professors are precise about it.

6. Lack of Braille. At my university, not every room number is accompanied by Braille, nor are the professors’ drop boxes. That makes things difficult because if I want to simply submit something to my professor’s drop box or find a classroom, I need to rely more heavily on help from others. Braille is a form of communicating and being able to navigate the sighted world; it needs to be kept up to date and it needs to be everywhere.

7. Feeling like I always have to prove myself. The truth is, I don’t need to prove myself to anyone. But sometimes I feel more pressure to prove to my sighted peers that I can do what they can do. I try not fall into this. I do things because I want to do them, not because I’m trying to prove anything to anyone.

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What It's Like to Ride a Horse as a Blind Person

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There are times when I have mentioned I ride horses to both the sighted and the blind and get the “why would you do that?”

My answer is and will always be because it’s fun.

But the truth is, there is far more to it. Riding a horse means another pair of eyes can help me. In some ways this can be great — few horses will walk into something. But in other ways it can be one big mess.

Sometimes a horse will do something you neither asked for nor needed. And growing up with OK vision, I naturally want to check with my eyes to see why. The fact is now I can’t do so because even with the little I can see, I know I am not getting the full picture.

Other times it’s my fault — like when I ask the horse to go right or left when there is no space to do so or another horse is in the way.

With all the odd things (and frustration) that come with horseback riding, I would never totally give it up.

When it goes right, there’s nothing like it. It’s somewhere between flying and working a guide dog (though my only experience with the latter has been a demo dog).

I do need a horse who knows his job well, which can be hard to come by, and the ones who do are worth their weight in gold. I also need someone on the ground who is willing to listen to me. I need someone who fully understands my capabilities. I need someone who is going to forget what they think I should be or need. Not everyone who is blind is the same. Someone with the same vision as me could be totally different. It is a hard thing to explain, and it is a even harder thing for people to understand.

I live in the space many people with a disability live in — I am somewhere in between a non-disabled person and what people assume a disabled person is. I can’t force people to change how they see a person with a disability, how they see someone who is blind, nor even how they see me. I can explain things, I show things that explain it, and I show them with my actions.

One of the first things you are likely to realize when learning to ride a horse is you can’t ”force” a horse to do anything. They outweigh you, but then you learn over time, asking and telling the right way gets them to do what you want. In some ways dealing with people is like working with a horse. If you try and force them to think your way, they are going to dig in their heels and use their weight to keep you from changing their mindset. They may even push back. But, like with horses, with people you can neither be passive nor fight. You have to give the information to them the right way.

And sometimes you simply have to walk away, let things simmer — and try again another time.

Image via Thinkstock.

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