Tag Archives: mobility and navigation

What Is Help?

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Here is some food for thought. Uncertain what street I am on, I will stop and ask someone. This is categorized as asking for help. Uncertain about what street they are on, a sighted person looks up and reads the street sign. We do not call this help.

A street sign does not magically appear suspended above our heads. It was ordered, made and hung there to aid people navigationally. However, if you can read it with your eyes, the effort behind and purpose for the sign’s presence is stripped away. You are functioning independently by reading information that is just there.

Why?

Public Speaking “Adventures”

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I was honored to be asked to speak at San Diego Pride’s Spirit of Stonewall Rally, which launches our city’s Pride celebrations. My mission was to come up with something true about both the Bi+ community and people with disabilities, distilled down into three minutes. For anyone curious, that’s less than 400 words. I found it incredibly difficult to accomplish this and in rising to the challenge, I learned useful things about my speech writing and public speaking process. (I’ll post the speech text in a subsequent post.)

While waiting to speak, the MC of the event — a member of San Diego Pride’s Board of Directors — invaded my personal space, touched me without my permission and made it clear he is bisexual. It is my hope that the last fact was uttered to find common ground with me, not as a sexual overture. The visuals of the entire event has been preserved for posterity.

Before you watch it, I should convey a few facts. Prior to speaking, I was warned the stage had a variety of obstacles and the back had no railing. I also suspected I could be seen from the audience as I waited for my turn to speak. Finally, as a Pride volunteer, the person invading my personal space was my ultimate boss.

You will find me at the back right of the stage, wearing a blue dress and accompanied by a black lab of incredible cuteness.

https://www.youtube.com/watch?v=7NIkTxJZdTc?t=40m50s

AS you may have noticed, the MC also “assisted” me to the podium. This was not based on any request of mine. In fact, it was not in keeping with the arrangements I’d made with San Diego Pride’s amazing staff.

So, to summarize, I was touched by someone without my permission and helped against my express wishes. Believe it or not, it took me a week to realize what happened was not acceptable. A week. (I’ll explain why in another post.)

Once it dawned on me that nobody should be treated in that manner, I brought it to the board’s attention. The person who responded said the board clearly needed more disability awareness training. When I pushed back, arguing no person should have this happen to them, disability or not, I received no response. Then life got a bit nuts with other things. (I’ll post about that later. I’m up to three now.)

I did not attempt to push the issue until September when Pride’s board did something else I found questionable. At a public meeting, I spoke about my experience in the vaguest of terms, allowing the offender to remain anonymous. Unfortunately, later in the meeting, when someone else referred to my accusation, Jaime Carrillo decided to announce, “I did it. It was me!” When someone suggested Mr. Carrillo apologize, I clearly said I did not want one. I just wanted him to stay away from me.

A month later, I attended another public board meeting and learned one of the board’s Co-Chairs had stated my situation had been resolved to my satisfaction. Having never even spoken to this person about what “resolving to my satisfaction would be, I objected.

At this same meeting, Mr. Carrillo managed to not honor my request to stay away from me. I grant you he was in a difficult position since the only path out of the room went directly by me. Instead of asking someone else to run his errand or verbally letting me know he was coming past, he simply walked by me, unfortunately tripping on my guide dog, which caused me to know he was very near me.

A week later, a story was published in the San Diego LGBT Weekly about what happened to me. It can be found at:

http://lgbtweekly.com/2016/10/27/volunteer-details-pride-officials-alleged-inappropriate-behavior/

 

The same day the story was released, I was contacted by the board for a meeting to, no kidding, “discuss the safety and well-being of everyone.” I suggested a more specific agenda related to what had happened to me and they agreed to the meeting. One can only assume they have agreed to the items I listed.

Stay tuned for whatever happens next and I owe you all some follow-up posts.

 

 

The Road to Discrimination is Paved with Compassion

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Lately I have become hyper-aware of situations in which kindness and compassion reign, but the end result is limitation and lack of choice. I tend to notice it happening when a group of people, including a person with a disability, are trying to pick an activity. With kindness and compassion, people will not suggest activities they feell aren’t possible for the person with a disability. That makes sense when it comes to not suggesting a peanut butter-making demonstration when someone has a peanut allergy, but not proposing a hike when a blind person is involved seems less reasonable.

 

My guess is the person not raising the idea of climbing a mountain is thinking, “Well, they can’t do that and I don’t want them to feel bad because they have to say no.” This sparing someone from having to be the “wet bllanket” is noble. On a deeper level, though, it might have less warm and fuzzy consequences.

 

Who said the blind person can’t hike? Unless that specific individual has directly mentioned they don’t hike, it is an assumption by a person without a disability about what a person with a disability can do, restricting the person with a disability. In the immediate, it means an entire group of people might miss out on a fun activity that had the potential to also broaden everyone’s understanding of what it is like to be sight impaired. What does a blind person need to hike? How does everyone work together to be certain everyone is enjoying themmselves? An opportunity was lost because someone assumed another’s abilities and tried to be kind.

 

There are also less obvious consequences. How, after allll, does a blind person learn how to hike if nobody ever takes them hiking? Will that blind individual ever think it is possible if the possibility is never presented? Someone else’s noble gesture mmight be, in fact, taking something away from someone ellse.

 

My cynnical side has a different possibility it keeps raising. On the part of the person not making the suggestion, how much is alltrusim and how much is self-interest? After all, including a person with a disability might mean everyone needs to walk a littlle bit slower or provide other forms of assistance. I can see space within this compassionate act that is more about just wanting to relax and have fun.

 

Much of what I write and think about these days boils down into a phrase that I would make the title of this blog, if that were easily achievablle.

 

Ask Not Assume

Beyond What’s Comfortable

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In all the promo emails of a band I like, they talk about giving to others beyond what is easy or comfortable. Reading between the lines, I think the idea is that giving to others when it is not much effort is a superficial gesture that while helpful to the person receiving your largess, does not come from the core of you. To connect with your core – to give in a way that moves beyond yourself to put the focus on another person,– is really what it is all about. Besides, giving to others shouldn’t involve you and your ego, instead it should be about the person and their needs.

Whenever I’ve read one of their brief references to this life philosophy, I’ve thought, “That. It’s about that.” Until five minutes ago, I hadn’t gone past that reaction to think about why the sentiment speaks to me on an instinctive level while not being a universal no-brainer to the rest of the population.

I think it’s about the nature of my life and the choices I make each day. Long ago, probably before I understood the concepts, my decisions about what to do and what not to do stopped relating to the ideas of easy and difficult. For someone with a physical disability, tasks can be harder than for the non-disabled people surrounding them. Quickly you realize that if you want to be a part of the world, you need to not let tough be a deciding factor. Rather, it needs to be about want, need, can and cannot. If I want to do it and I’m capable of it, then I do it. On the other hand, if I want to do it and no effort in the world will make it possible (i.e., a blind person becoming a neurosurgeon), then I need to rethink things.

My life is full of choices about desire and possibility not ease and comfort. It is no wonder that when it comes to giving to others, I instinctively don’t think in terms of effort and ease. I make decisions about aiding others based on their need, my ability, and my desire to help, largely based on how much I care about the person. And based on what these musicians are saying, this might be where I fall short.

Should helping be limited by how much you care? When I think about it with me as the helper, I see reasons to answer yes. Cast in the role of helpee, I have reasons to support the opposite perspective.

I like to think making helping decisions based on the amount I care is about allocating resources. I’m one person with limited energy and should probably distribute that resource with care. However, careful conservancy of energy is not dictated by caring. I’ve simply used that as an easy, convenient way to make choices. Possibly I need to move beyond using the easy benchmark of caring to other more selfless factors?

Far clearer are the variables when I am cast into role of helpee. Of course total strangers should help me if they can. Time, effort, convenience and caring shouldn’t limit others. I need help (damnit), so help me. And, yes, on some level I’m that ridiculous. I suspect anyone would be if they were standing on a street corner, confronting crossing a highway off-ramp, and pretty certain of becoming road pizza if they step off the curb.

The challenge in modern society is to find a way to navigate seeing many people in need while working with limited resources.  Our decisions should be less about ourselves and more about the one we would aid.  From what I can tell, many are challenged by having to look beyond their own ease and discomfort.  Once you move past those factors, others — like allocation of resources and decisions about who — are the new hurdle.  It isn’t like once you stop thinking about comfort and ease the situation is magically clear.  It just becomes about other factors that equally call upon us to dig deep and walk a path that requires us to care about those we don’t even know.

……because

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It all began when a person in a wheelchair boarded my bus and the driver made the person with the cart move to a seat where the cart would obstruct the aisle. I was not asked to move, but after the bus got underway again, I turned to the cart’s owner and suggested I relocate so she could have a seat where the cart would fit. In the process, I bumped my head.

……because I tried to help.

Next stop my psychiatrist’s office. Typically, his patients flip a switch to indicate their arrival. I cannot do this since there are no accessible labels and I cannot seem to retain the switch location in my head. It has never been an issue in the two years I’ve been seeing him — he’s always come out into the waiting room to retrieve me. This time around, when I had waited ten minutes past my allotted time and could hear him speaking back in his office, I called leaving a message on his voicemail indicating my presence. Another patient eventually arrived, flipped the switch and my doctor materialized, seeming surprised at my presence.

When I said, “Um, I don’t know which switch to flip and this has never been a problem before,” his reply blew my mind. “I just thought you weren’t coming. I never thought about the switch.”

……because I’m so unreliable.

Next was the man by the elevator. He clearly wanted to be helpful, did not know how and used hovering as a means to deal with his internal conflict. He kept telling me things I already knew or was working on figuring out and then continued WATCHING me.

He did alert me to the goo stuck to Camille’s leg, becoming flustered when his phone rang while he was trying to pull it off. I waved him away, determined removal by pulling wasn’t going to work and took off. While waiting for the bus, I used the handy scissors on my pocket knife to remove the goo-matted fur from Camille’s leg.

……because boy scouts have nothing on me.

Once again on the bus, I was sharing a three-person seat with a man, who moved when an elderly woman joined us. The woman made loud, critical declarations about his behavior and I think I offered something like, “Maybe he thought three people and a dog was too much on one seat and decided to give us some space.”

Then the woman began to tell me about her blind neighbor. This *never* turns out well. Ever. Her neighbor was “so amazing” for doing everything on her own, even shopping. She could cook, too. It was all just so amazing that she thought the woman couldn’t possibly be blind and had an argument with another neighbor about it. I suggested maybe she could change her definition of what a blind person could do.

I was then told about how this blind woman assembled her nephew’s birthday present on her own, using screwdrivers and everything. “Amazing” was repeated a few more times. I said I liked to assemble furniture.

The topic shifted to her evening’s attendance at a baseball game. She has back trouble and the stairs are really steep. I commented that it sucked that ball parks weren’t accessible to everyone.

She thought it was just wonderful that strangers would reach out and offer their arm so she could descend the stairs. I repeated my comment about lack of accessibility. She repeated that people were just so wonderful.

……because “wonderful” and “amazing” hadn’t been said enough.

Off the bus and walking home, I was crossing a street when not one, not two, not three but FOUR skateboarders whizzed past me while I was in the middle of the street, startling Cam so much she actually moved sideways and stopped in her tracks..

……because the joy of boarding trumps the safety of others.

Upon arriving home, I yelled “ARGH!” at the top of my lungs and then did it a few more times. Camille went and had a drink of water. About when I stopped the yelling, she walked over and vomited up… everything at my feet.

……because a comedic author is clearly crafting the story of my life.

Public Property

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Pregnant women often speak about total strangers asking to touch their bellies.  The social mores that keep people from requesting contact with the body of someone they do not know suddenly vanish in the face of that rounded mound of baby.  Even worse, a significant number of people don’t even request permission before giving a rub.  I cannot come up with another situation, except maybe when it comes to “directing” a blind person, in which respect for bodily personal boundaries is ignored.  Even when an individual in a crowd simply brushes up against a stranger accidentally, they apologize.

This behavioral anomally around pregnant women has been framed in terms of the woman’s belly becoming public property – as if everyone has the right to touch it the way they would a soft blanket on display at a department store.  Attempting to explain a specific behavioral tendency that currently has me annoyed, I reached for an example my therapist might understand and came up with that of pregnant women’s bellies.  Aspects of my life are being treated as public property.

Approaching a bus stop where I was to wait for a friend, I was asked by a man if he could pet my dog.  I said no explaining that while wearing the harness, she was working.  Apparently, he didn’t like my answer because a tirade ensued.

 

He started with the point that one little pet wasn’t going to be a problem.  I disagreed.  He then said I was being cruel and was I afraid my dog would hurt him?  I tried giving the complicated explanation about distractions and my safety.  He said if my dog was that badly behaved, she wasn’t trained well.  Was I just not training my dog properly?

 

I admit snapping at that point and saying something about having a dog previously that was highly distractible leading to me getting my nose broken.  That did not penetrate his skull.

 

About then, my friend’s “Just walk away.  He’s nuts>” penetrated and I tried leaving.  Really, I tried.

 

I had to turn back when he told me I should “Just stay home.”  Excuse me?  I don’t think so.

 

Let’s just say it went south from there and he was really insulting.

 

My point?  This man treated me, my dog and my life as though he had a right to comment upon them.  Everything about me had suddenly become public property.  I was the politician whose life is open to public scrutiny.  I was the actor living in the public eye.  I was just lacking any of the compensatory perks either of those roles supposedly bestows.

 

The worst part?  People stood there watching and did nothing.  Nobody said, “Hey, man, it’s her dog.  Leave her alone.”  In their silence, they were condoning his behavior.

 

To paraphrase a mother-to-be’s comment, “It’s my dog.  Keep your hands off!”  And, I would add, your opinions to yourself.

 

 

Amazing Revisited. Again.

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Don’t roll your eyes, but I’m back to that “amazing” thing. Again. This time with something new. Promise.

I get to a doctor’s office via my dog, my feet and a bus. When the receptionist discovers this, she is in awe of me. Previously I’ve thought about this behavior in two ways. I’m amazing because I have failed to live down to the low expectations another individual has. I also become amazing when a person imagines walking in my shoes and decides I am doing something they could not. Now I think there might be a third possibility related to obstacles.

When people consider me going from point a to point b, they generate a mental list of all the steps that they think involve sight– assessing traffic to cross a street, determining what bus pulled up at the stop, getting on the bus and finding a seat, knowing what stop to disembark at and so on. Each of these tasks becomes tagged as “obstacle for blind person” in their heads. Because I have surmounted these obstacles, I become “amazing.”

This mental process is distinct from the first two, for there are no assumptions made about what I cannot do. The accolade is *earned* by doing things perceived as *challenging*, granting the praise the distinctive flavor of possibility. My amazingness is engendered not by doing the impossible but by accomplishing the unusual.

I have less objection when amazing is about overcoming an obstacle. I’m not performing magic, just doing something that might be hard. I can live with aspects of my life being perceived as hard, calling for skills most haven’t cultivated or even simply requiring above average persistence. It feels far less dismissive of…me.

Many people with disabilities, myself included, have issues with the concept of overcoming. The root lies in the fact that typically what we are seen to overcome is our disability, not the physical and social barriers society has created. To me, blindness is my natural state of being, so deciding that I have overcome it seems absurd. Do people of color overcome their skin color or the societal inequities and prejudice they encounter? Do cis-gendered women overcome their biology? Disability is a form of human variation that is an inherent part of the person possessing the trait. They’re not something you can discuss in terms of overcoming.

So, while being seen as amazing for overcoming obstacles is not totally insulting to me, I do take issue when the obstacle is perceived to be my disability. It’s like seeing me as amazing for overcoming my curly hair or extraordinarily narrow feet. The concept literally makes no sense. Fish, here’s your new bicycle. Ride it.

Jen’s Terrible, Horrible, No Good, Very Bad Day

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Thing One

 

The first incident wasn’t all that bad – almost routine in fact. I was at a meetup type gathering and most of the attendees were strangers. About forty-five minutes into the conversation, I suddenly realized a segment of the group didn’t realize I’m blind. (My guide dog, Camille, was out of harness at my feet.) “Um, you know I’m blind, right?”

“Oh, no we had no idea.” I could have scripted the next part. “You don’t seem blind.” There I go again not living down to low expectations of my behavior.

 

Thing Two

 

The next was far more ominous. On a “no destination” walk with my dog, I crossed a street and a man asked where I was going. I knew the street dead-ended somewhere, so I asked if I could keep going or not. His answer was not, so I asked if the street we were on met up with another street. “No, you have to go back a couple of blocks.” Great.

I got my foot caught up in a plastic bag that was in the gutter and had some trouble untangling myself, then I took off. About a block along my route, the man calls from behind me, “Turn there.” or something. He had *followed* me. Followed.

 

Thing Three

 

I next ventured to the Transgender Day of Empowerment ceremony at the local LGBT center because a friend was receiving an award. Upon arriving in a very crowded auditorium, I was trying to convince my guide dog to find a seat, but she was as overwhelmed as I. A woman approached, introduced herself as Tracy and offered help, which I accepted.

She took my arm in the hold you are taught for drunk people so they can’t escape. I was dragged to a chair, but I let it go. Later I realized there was someone’s jacket on the chair, meaning I’d taken someone’s seat. I let that go too.

The woman who had helped me was the M.C and immediately prior to concluding the ceremony, she said something like, “There’s this young woman who I see in Hillcrest all the time.” She kept going and it finally dawned on me that she was referring to me. I put my head down and began shaking it no rather emphatically. It didn’t help.

“I’m coming toward you, dear. What’s your name?”

I answered.

“Now I want someone to volunteer to help this nice young woman get some cake.” She didn’t stop until someone volunteered.

 

Thing Four

 

I fled the room, hid out in the bathroom and then took my dog outside to relieve herself. I was headed back inside, reaching for the right door handle, when someone came out the left door. Fast. I was hit in the head. Camille let out two yelps.

Commotion ensued with ice bags and emergency room nurses coming to check us out and people and more people and orders not to take the bus home and….. I handled part of it badly. Eventually, someone I knew gave me a ride home. Camille wound up at the vet, needed X-rays and was restricted to light duty until the bruise she sustained healed.

 

Thing Five

 

By this point in my week, I needed some fun. With enthusiasm, I went to my first in-the-theatre described movie. We got my headset from Guest Services — my specific request for “the one for blind people.” It didn’t provide descriptions and my companion finally left the movie and went back to Guest Services where she acquired the proper headset. (I’d been given the one for Hard of Hearing folks.)

 

Thing Six

 

Finally, and most amusingly, dinner. I ordered a salad with peaches and caramelized onions. About two thirds of the way through my meal, I asked my friend, “Where are the peaches?”

“There aren’t any,” she said, baffled.

“Maybe these shriveled up things?”

“Those are cranberries.”

I tasted one. They were.

We asked our server and he came back saying I’d gotten the right salad just without peaches and he brought me a bowl of them.

I said to him, “This is one of those things that happens to blind people. I just assumed the peaches were somewhere on the plate but I hadn’t found them yet.”

I thought that was funny, and my friend was certainly amused. The server -– poor man –didn’t get it.

Don’t Watch!

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There are times when I stand on the sidewalk, Camille Guide Dog Extraordinaire at my side, trying to figure out some navigational complication. Often I’m simply trying to “hear” what’s going on. Passers by may stop and ask or offer assistance — an appreciated gesture that I sometimes accept gratefully. Unfortunately, a response from me of “No thanks. I’m good,” can result in problems.

People step back and *watch*.

I know this because when I get past the challenge, they might comment, my ears may pick up a slight sound or I can feel the weight of their eyes upon me.

So, there I am, trying to sort out a mobility issue, while somebody hovers. It’s creepy. It’s annoying. It’s rude. And, if I were sighted, it wouldn’t be happening.

Most significantly, it shows a profound disrespect for my own judgment for if I’ve said I can take care of it, standing to watch implies at least a suspicion I am wrong. Well, either that or some over-the-top fascination with how I function as if I’m an exhibit at the zoo. (I am not an animal in the monkey house. Promise.)

There is one crucial fact that might escape the average non-disabled person. Taking time to listen to my surroundings allows me to deal with situations as I study them with my ears. I may be working through a set of circumstances that challenge my skills and if people always save my butt, I will never learn how. Saying “No thanks,” can be me granting myself a learning opportunity. Those are good for me, right?

I suspect people’s motivation to stand and observe usually comes from a good place. They don’t want me to get hurt. While I value the goal of keeping me in one piece, I still cannot stomach it when someone lingers. It’s yucky. And did I mention creepy?

So, I am declaring anyone who walks away when I say, “No thanks,” off the hook if I turn out to be wrong and break a body part. Absolution is yours.

But I know this won’t be enough. Here’s a way to handle it that helps the non-disabled person feel good about leaving whilst demonstrating respect for me.

Tell me your concern while acknowledging your ignorance and taking responsibility for the discomfort you feel with moving on. “I don’t know much about how blind people navigate. I don’t know how you would handle x situation which is making me unreasonably concerned.”

Make it your fault – because it basically is – and see what happens. Since nobody has ever done this to me, I can’t guarantee the response. I can say that it would feel better than the hovering. Much better.

I encourage you to go forth and try it, then come back and leave a comment. I need data.

Riding The Bus With My Dog

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Ever wonder why bus drivers need to announce *every* stop? Here’s a great example.

To conserve energy so I could attend a yoga class, I decided to take a bus one way to the vet’s office. As usual, while swiping my bus card I told the driver my destination. After sitting down, I pulled out my phone to monitor the street numbers as they passed. My first mistake was in putting the phone away just before my destination.

The driver did announce all the stops, which had me convinced she would also indicate the one I needed, even if she forgot I wanted it. That was my second mistake.

She didn’t announce my stop nor did she stop. When she announced the stop after mine, I called to her, “I wanted 39th?” I think her response was simply saying she’d gone past.

When I got off, I inquired, “How many streets back is the stop I wanted?”

“You should cross the street and take the other bus back,” she replied.

“Don’t have time. Do you know how many?”

“Two or three maybe. Sorry,” was her answer, with the apology covering either her lack of knowing or her mistake or both.

Armed with this wealth of information, Camille and I began walking. About the time I reached the second intersection, it dawned upon me that I would need to cross either on or off ramps for a highway. Having never done that in my entire life, I was a bit…. concerned. With a crosswalk and light, it was probably one of the safer ways to cross an off ramp, but without an audible signal, it was still daunting. I spent a long time listening to the traffic pattern trying to figure out how you timed things.

I have to say that my little black dog was awesome. I might have been flipping out, but she was a total pro.

And then we had to do it again on the other side of the overpass.

Bus drivers are suppose to announce *all* stops whether they pull up to take on or disgorge passengers precisely so that blind people can get off where they wish. This driver’s mistake put me in a pretty unhappy situation only mitigated by the fact that my dog is good at her job.