An Inconvenient Truth

Posted on May 1, 2014 by Jen

Social isolation has been a blight plaguing me for a long time. Ten years ago, when I first began attempting to eradicate it, I acted as if I was the cause. Obviously, I was behaving in a socially abhorrent manner to the point that people actively avoided my company.

Informed by the feedback of others and anything pop psychology had to say, I began rehabilitating my personality and behaviors. “Maybe you talk too much.” “You should have a list of possible topics to discuss.” “Are you showing interest in other people?” “It is your job to put others at ease.” “You need to be understanding of other’s ignorance, educate them and then be patient.” “You need to try harder.” Everything I tried failed and I thought this meant I had failed.

Nobody likes to see themselves as a failure, so I searched for another explanation and began considering how chronic illness limited my outside activities. Without a job and active lifestyle, I was not encountering The Magic Number of People required to find close friends. Armed with this explanation, I got creative about using my energy and became more active in the world beyond my doorstep.

Guess what? Stepping outside did not launch me into a crowd of close friends. Because I kept hearing that doing what you loved would bring people like you into your sphere and be transformative, I modified my approach. Still wasn’t surrounded by a circle of intimates.

I went back to the hypothesis that chronic illness was simply too limiting and added to it. Perhaps blindness’s impact on social interactions, making eye contact, facial expression and nonverbal communication impossible, was severely limiting my ability to connect with others. Concluding the situation was beyond a mere mortal’s control, I gave up.

With nothing better to do, I began working on building my skill set by volunteering and joining a blind group. Now busier than ever, I still cannot find intimate connections, so maybe it isn’t my chronic illness’s limitations? Immersed in a community equally unable to engage in nonverbal communication, I did not suddenly sprout intimate connections, so maybe it isn’t blindness’s fault? Eighteen months of psychotherapy and the only consequence is a therapist who enjoys my company to the point that I had to ask him to enjoy me less and treat me more, so maybe I don’t have a huge personality flaw?

Here is the inconvenient truth that everyone on the planet seems to wish to avoid admitting: Disability makes non-disabled people uncomfortable and there is not a damned thing the person with the disability can do about it. Yes, as a society, we have made great strides in accepting physical difference, but we have not reached the point where having a disability is to simply possess another form of human variation. Eventually, we will arrive at the place I dream about, but not next month or next year. This type of fundamental change moves slower than glaciers and all I can do is my part to keep the process headed in a good direction.

You know what would really help? People not pretending we live in enlightened times where my disability isn’t leading to social isolation. The creative delusions that it is somehow my failing and thus my problem to fix is not only untrue but actively damaging to me and more importantly millions of others. I’m not asking anyone to become my new best friend, but could you at least stop believing this is about me? It’s about all of us.

This year I again proudly participate in Blogging Against Disablism Day 2014. For more information, please go to:

fhttp://tinyurl.com/BADday201Blogging Against Disablism Day 2014

Who?

Posted on February 7, 2014 by Jen

Pop quiz time everyone. Sharpen those pencils or maybe in this day and age it’s create a new note on your phone and get ready to answer a few simple questions.
1. If you needed a ride home from the emergency room, who would you call?
2. You need to move a piece of furniture that’s too heavy for you alone. Who can you ask?
3. It’s Thanksgiving and you aren’t cooking for anyone. Who will include you in their celebration?
4. You are sick with the MartianDeathFlu. Who will offer to come over and make you something to eat?
5. Who will go out of their way to come give you a hug on a bad day?
Now, on your list, please remove anyone in your family or that you are dating. Take off coworkers as well. Who does that leave you with?
One of the consistent problems plaguing my life is a lack of someone to help and support me. Whether the pragmatic or the more intangible of emotional support, I seem to routinely have no answers to the above questions.
For example, last time I needed to move my couch, I had to open the sofa bed up, pull out the mattress, put the frame back together, move the couch and then reassemble everything. Yes, it worked. No, it wasn’t any fun at all. I suspect the dog was plotting how to have me assessed for insanity.
Why, though, did I ask you to remove family, significant others and coworkers from your answers?
Many people with disabilities have complicated, difficult relationships with their families and are not close in the way necessary to receive ongoing support. While they might need the love and support relatives can give, the mere fact of dependency frames the entire situation in parent-child terms for that is the model we all know the person needing care is the child and the person offering is the parent. Even when it comes to elderly family members, the relationship between those individuals and their children is often discussed in terms of the parent “becoming” the child. We don’t have a language or paradigm that allows for needing another family member in an ongoing, dependency based way that does not reflect an adult child relationship. and who wants to be a grown up having to accept the limitations of childhood in order to get their needs met?
People with disabilities are often more socially isolated than their TAB counterparts, find dating to be more challenging and more frequently are single as opposed to part of a romantic relationship. This means we are less likely to have significant others or spouses to lend a helping hand.
With the unemployment rate of people with disabilities at something between 60 and 75%, coworkers are often not a part of our personal landscape either.
This leaves us with our friends to turn to in times of need. In our twenties and early thirties, when many people live more care-free lives, reliance upon friends works great. They need you. You need them. Everyone gets their needs met. It’s not perfect, but things tend to work out most of the time.
Then TABs begin to pair off, acquire mortgages and kids and car payments and friends become the parents of your kid’s friends, people you share a meal or glass of wine with and those you keep tabs on via Facebook. Meanwhile people with disabilities have often not shifted to these life “milestones” and still need the friendships that sustained us in our twenties. We haven’t been able to replace those relationships with others and this creates a big void that often becomes evident logistically yet probably impacts the individual most on an emotional level. After all, you can go through an insane process to move your ridiculously heavy couch, but who will come give you that hug?

The Cost of Safety?

Posted on January 27, 2014 by Jen

I signed up for a free class at my local Braille Institute (BI) and received a letter informing me of a new policy. I will be required to wear a print name badge with colored lanyard – green for student, blue for staff and red for volunteer. I loath and typically refuse to use name tags in any form because they grant sighted people a social advantage. I was indignant that an organization serving blind and visually impaired individuals would require me to do this detestable thing. Of course I marched into an administrative office and expressed my discontent which began what I hope is a dialogue leading to policy change.

BI has reasonable concerns about security heightened by the 2012 shooting at Sandy Hook Elementary School. They want a means to identify who is allowed on campus versus who might be unauthorized in order to prevent tragedy. Additionally, there are concerns about identifying people in a disaster situation. By displaying name and status, they can know who should be present which will keep everyone safe.

Another reason given involved promoting social interaction by allowing names to be known. In fact, some students have been asking for name tags. (An excellent example of how people with the same disability can have drastically different preferences.)

Indeed, name tags are a great social lubricant. Aside from the pragmatic benefits to name recall, people can also address each other by name, granting an essence of friendliness and familiarity to conversations. Not being able to read name tags denies someone all this social ease.

Blind people are already at a social disadvantage because of society’s eye contact and body language heavy communication patterns. Heaping more disadvantage onto that is suboptimal and unnecessary. Though we might not be able to make our culture suddenly cease utilizing visual communication, we can at least not bless sighted people with more social advantage while compounding the amount of social disadvantage blind people shoulder.

Furthermore, because a blind person is forced to repeatedly ask for names, their difference is emphasized in a way that highlights an inability. It becomes yet one more thing I cannot do that I must broadcast each time I ask for a name. Even in a blind and visually impaired population, a division will still be demarcated between those who can see enough to read the name tags and those of us who cannot. Advantage for some, disadvantage for others.

Some argue that even if I cannot read other’s name tags, their ability to read mine allows them to overcome communication barriers by giving them a name by which to gain my attention. Unfortunately, when I have capitulated to the demand of labeling myself, I have noticed no increased social engagement. And I use the word “label” specifically because putting on that piece of paper doesn’t just give my name, it makes my disability larger than it already looms.

This leads to my second objection – color coding people into the categories of staff, volunteer and student. In and of itself, color coding can be highly useful as evidence by sports teams, hospital I.D. bracelets and summer camps the world over. We do not, however, put all the kids in need of special reading help in red shirts, require anyone over age 55 to wear a silver armband or demand people with a specific disability wear a sign.

It is an unavoidable truth that in this situation denoting student status inevitably and accurately indicates disability status. Because people with disabilities are a protected class known to experience discrimination and violence solely based upon that status, we should not be literally marked as such.

Furthermore, in terms of safety, anyone labeled blind by color or the word student becomes that much more vulnerable. Who better to victimize than a person you know will have trouble seeing you? Thus, marking me as a student clearly identifies me as the ideal target.

I understand and support the idea of having a means to know who should and should not be on BI’s premises. I also recognize the unfortunate necessity for people to carry some sort of I.D. in case of medical emergency or body identification. I believe there are means to address these concerns without utilizing problematic tools. Insisting all students carry identification is a place to start. Having badges with our pictures allows face and photo to be matched which is far less able to be forged than a simple name. An I.D. number would help in case of emergency. A print name could be included if the student requests it.

As for color coding and other means of indicating student status? There is no methodology that would allow for it because student equals person with a visual impairment. Besides, what security goals are met by sorting people into the three groups?

Others have voiced additional concerns related to this policy. Campus vulnerabilities exist that will not be addressed, including no means to detect dangerous items on someone’s person, lack of techniques to minimize congregation of students as they are loading and unloading busses and any means for a blind student to know who should and should not be on campus. Even lanyards represent a safety risk because they can be caught or grabbed tightening around someone’s neck.

Before turning to safety procedures that create social barriers, highlight difference in a negative way and clearly mark a protected class of individuals, I urge BI’s decision makers to look outside the typical security toolbox to solutions that meet the needs of the unique population they serve. I appreciate being kept safe, but please don’t force me to pay these avoidable costs for that security.

Eye Contact

Posted on November 13, 2013 by Jen

You walk into a coffee shop planning to be a total hermit behind your book while you enjoy a beverage. You see a blind friend hanging out with someone else. In such circumstances with a sighted person, you would probably make eye contact, smile and move on. However, that’s not possible in this situation. What do you do?

I can tell you what to NOT do under any circumstances. Say nothing at the time and then later tell the blind person you saw them. It’s creepy. And somehow demeaning. Oh, yeah, and it seemingly feels worse when you are female.

The better move is this: Walk past the table – not over, but past – and say, “Hey, it’s <name>. I’m just passing through.” Done. The reason, by the way, for the “walking past” part is that it provides the element of casual eye contact as opposed to a desire to engage in extensive social interaction.

People seem hesitant to offer a verbal greeting for fear that they will get sucked into a conversation. While that risk does exist along with the possibility of awkwardness, those should not be obstacles to doing the right thing. By approach, you can minimize the risk.

And, did I mention, it is otherwise creepy and somehow demeaning?

Magic Words

Posted on May 1, 2013 by Jen

About a year ago, I hit a wall known as My social Life Sucks. Nothing I tried – and I tried everything short of a personality transplant — seemed to increase my social connections or generate more emotional intimacy in my life.

Enter my fabulous therapist – a fifty-year-old man who somehow gets it. He’s made it clear from day one that he knows nothing about disability, yet I felt more understood in my first session than I have with the majority of my friends. When I tell him I think I get ignored in groups because I’m disabled, he not only believes me but understands why it happens. That’s valuable in a way words cannot express.

We have hit an impasse related to my social interactions with non-disabled people. FabTherapist believes there are a string of words I can say that possess sufficient potency to get people to notice who I am. A carefully crafted handful of sentences have the power to shift perception from “Blind, incapable, weird looking person” to “Smart, funny, intelligent woman.” His argument is that people meet someone like me and suddenly don’t know their role. For a stranger, the situation is full of unknowns, fears and a general sense of uncertainty. Giving them some context and a function in the social dynamic will allow them to feel comfortable with me, freeing them to notice who I am.

I believe words have power. They don’t have that much power. Non-disabled people need time and exposure to move past their initial impression. The problem is that most don’t take that time and in fact, their subconscious writes me off often without consulting the conscious mind. There are no magic words to subjugate this process.

Okay, there is something that has the power to derail things – shock. It’s why some women with disabilities dress provocatively — to shock potential dates out of the “not sexual” mindset.

What would I need to do in order to shock people? Would that be in line with my personality?

“Yes, I’m blind. Be careful. You don’t want that to cause you to underestimate me. That would be a bad idea.” The last sentence would be delivered with a slow smile. Not even sure I’m capable of a slow smile on purpose let alone uttering those words.

If I could conjure up the MagicWords, I still get stuck on the idea that I should have to say them. It’s not my job nor should I take on the task of easing non-disabled people past their prejudice. Disability is not exclusively the responsibility of the disabled. As a society we have created this state of affairs and as a society we should deal with it.

Besides, if I noticeably aid people in coping with their discomfort, I’ve set a precedent. “You made me comfortable, Jen. Now, when it comes to your disability, I expect you to do all the rest of the work too.” Do I want to establish such a pattern?

Yet, inaction will not change anything. Principles are great, but they don’t make you feel loved and valued.

Besides, women have needs. And hormones. and needs that go beyond hormones.

Through My Eyes

Posted on March 21, 2013 by Jen

When I meet a TAB (temporarily able-bodied) person, they are not the first, second, or even third member of that community I have encountered. Having grown up in non-disabled society, I am very familiar with what it means to be non-disabled. I know about mortgages and kiddie carpools and working moms and stay-at-home dads and midlife crises and divorce and being elderly. I have been steeped in non-disabled culture to such an extent that it is second nature to understand the lives of the non-disabled people I meet every day. I don’t need to have lived the experience to relate to it because of my massive exposure.

I am quite often the first disabled person a TAB has ever met. That individual has no frame of reference, no vast exposure, no years of observing other disabled people to help them relate.

Instead, TABs rely on other means to understand such as imagining what it would be like if they were blind. Unfortunately, lacking any knowledge of the specialized training I’ve received or years of experience I’ve gained, TABs can create a very skewed impression of what my life must be like. They then call upon this inaccurate perspective to attempt to comprehend, evaluate and judge my life.

These efforts fail miserably resulting in things like: “Wow, you are so amazing. I can’t believe a blind person can…” “I’m so inspired by you.” “It’s such a shame you can’t see.” “You must not be totally blind because you just…” “You can’t see, so let me do that for you.”

People can become very entrenched in their beliefs, assuming thirty seconds of imagining what it would be like to be blind is more accurate than the reality I–a blind person–describe. I’ve had arguments. Lots of them.

TABs thinking they understand what it’s like to have a disability better than someone *with* that disability are not limited to imagining walking in our shoes. Basic beliefs about how the world works can inform reactions. Those who think people are essentially good have trouble comprehending someone being unkind to a person with a disability. Customer-service people tell me to ask my neighbor to read my mail believing they would read the mail of their theoretical blind neighbor. Folks who believe our social-welfare system is adequate and flourishing act like I have help coming out of my ears to accomplish any task I want. How a person sees the world impacts how they see my life.

I’m discovering this phenomenon of “I know better about you than you” is more insidious than the smell of skunk spray. From strangers, it is somewhat excusable for they have little data to use besides their own imaginations, view of the world and some dimly remembered after-school special. Friends, however, should in theory know better because they have evidence gained over time both through observation and direct conversation. And yet, often friends of years fall back on this attitude of knowing better than me what it is like to be me.

This phenomenon is not unique to the disabled versus non-disabled populations. Men think they know what it’s like to be a woman better than women. “Oh, honey, that guy in the hardware store wasn’t being condescending. You’re overreacting.” Those outside a marginalized group often dismiss what a member of that marginalized group conveys about their experiences substituting their uninformed outsider view for that of an expert.

When, exactly, did it become reasonable, let alone smart, to take the opinion of a lay person over that of an expert?

I just lost a friend because of this. He firmly believes that his assessment of how I’m reacting to my current emotional turmoil is somehow more valid than my own. He’s never lived through any of the things I’m struggling with, but he is certain it’s perfectly reasonable and possible to handle them in a better way. I refrained from saying, “How about you try and let me know.”