The UU Experience

Sometimes it seems like everything that leaves my mouth is about disability, more than half of it critical. Sunday, with my maiden voyage into San Diego’s First Unitarian Universalist Church, I again felt obsessed.

In the beginning, I kept the words from passing my lips as we walked down stairs that led to a ramp. I suspect there is some form of wheelchair access, but all I could think was, “Great, stairs to ramp. How… aware.”

Next, my friend read me the service topic “Broken Open: How Difficult Times Help Us Grow.” I was intrigued, but “broken”? A mental roll of my eyes.

Further pamphlet exploration revealed we would sing “Amazing Grace”. This finally ended my silence. I explained the line “Was blind but now I see” is inherently ablist whereas “Was bound but now I’m free” avoids that yet maintains the overall message.

The service began with “Rise if you are able.” Knowing my energy limitations, my friend offered to stay seated with me, but I said standing was fine even though the whole thing was ablist.

The sermon peaked my curiosity. How would he go about addressing something I know on a bone-deep level? He opened with the line, “Life is not a problem to be solved but a gift to be opened.” His main point was that fixating on and identifying with the traumas of our past keep us mired in the pain unable to experience what life has to offer. While wounds need tending and the pain cannot be pushed into a corner, there can be a place where you recognize the suffering, learn from it, and then live life.

There was so much emphasis on not identifying with one’s pain that I began to question myself. Do I cling to disability as some sort of wound and therefore miss out on life? Is my tendency to be disability obsessed a symptom of not letting go? Have I made an avocation out of poking at my wounds?

Lunch proved an excellent place to lay out these doubts. Then, I explained that I see my disabilities as positives that shape my life and inform who I am as a person. I asked if I was deluding myself with pretty rationalizations.

While I was unable to differentiate between clinging to past difficulties versus the way I live, my friends found it easy. I guess it’s not about where you invest your time or what occupies your mind. Instead, it is about the spirit in which you go forth and live. Do you pick up your difficulties and shoulder them as a burden? Are you pulling the misery out for public display? Those would be a kind of holding on that keeps the wound fresh. According to my friends, I mention my disability in a matter-of-fact way when relevant, do not have a rain cloud of suffering that lurks over me, and contrary to my perceptions, I do not talk about disability incessantly.

Embarrassed though I am to admit it, I equated disability with a negative assuming that when the minister mentioned physical difficulties he meant someone like me. Hello? He can mean whatever he wants. I do not have to swallow the assumption of disability as trauma. While he may have given me a nibble, I ate the entire cookie. Whole. And enjoyed it.

Language was mentioned in our lunchtime discussion, specifically the use of “my” as opposed to “the.” There is a line of thinking that says placing my before a word like depression makes it central to your own self-identity granting it undue influence so that you are less likely to recognize or bask in other emotional states. Consider these two sentences. My depression sucks. The depression I experience sucks. While they convey the same concept, the latter offers a degree of distance. I can see the merit in maintaining perspective and balance through word choice.

My point of view is slightly different. Is it words or is it attitude? I can talk about my PTSD without ever once thinking it is a significant defining force in my life, or even particularly relevant most of the time. I’m not so much claiming it as referring to it as I would my eyes or my legs. Never have I alleged, “The legs on my body are long,” but I have said, “My legs are long.” Perhaps when you perceive something as trauma, language keeping it distinct from yourself is necessary. When the topic in question is a fact, then more personal language is less problematic.

A poem by Wislava Szymborska was read during service conveying the idea that taking away one aspect of a person, like their amazement with life, would transform them into another human being altogether. Because my disabilities come with me wherever I go, necessarily impact my actions, and effect how others interact with me, they are an unavoidable fact woven through my life. Taking them away would make me unrecognizable as myself. We talk about “my race,” my gender, and “my religion” making these facts part of our identity. Why can’t disability be a similar fact that enriches my life and grants my character complexity?

Wow in a Bad Way

A case of “You can’t play” has come to my attention that is so glaringly wrong I feel compelled to post about it here. In addition, I have a personal connection because of the college in question and the disability awareness work I did in Amherst, Massachusetts.

Mout Holyoke College (MHC), located in South Hadley, Mass, is one of the Seven Sisters as is Vassar College, my alma mater. Back when schools like Yale, Harvard, and Amherst college were exclusively male, the Seven Sisters evolved into the female counterpart of these universities. In point of fact, I believe MHC is the oldest female college in the country. It is also part of a five college network composed of Smith College, Amherst College, Hampshire College, and Umass Amherst. Thus my disability rights work brought me in contact with MHC students.

A friend pointed me at a blog written by a MHC student who tells us about her first year on the campus through the eyes of her service animal Holden. Dog in the Dorm As she bemoans in this blog, it was meant to be a light-hearted way to keep people up to date on her life. Unfortunately, MHC has behaved so badly that it became a chronicle of her frustrations and struggles. In reading it, you can even tell how hard she endeavors to keep things light in the face of what I categorize as “WE want you gone yesterday” behavior.

This student has a mobility impairment and a chronic health condition, so of course they put her on the third floor of a dorm with several heavy fire doors to open either coming or going. Her room was so small she had to park her scooter in the lobby so anyone could mess with it. It took them until the spring semester to move her to an appropriate room, but it seems problems still exist. When she took her service animal to the various dining halls, she was denied admission. This lasted more than two months until the school finally agreed to post signs with the service animal policy clearly stated at all dining facilities. I could go on, but really she tells it better.

You would think that such a prestigious school originally founded to provide equal educational opportunities to women would know better. You would think that almost 20 years after the signing of the Americans with Disabilities Act would make such behavior extinct. Nope. Here’s the worst part: She’s not alone.

Apparently, other MHC students are routinely experiencing similar problems and are unable to resolve them. The student with the blog has retained counsel and things are changing for her, but what about the other students?

I wanted to do my part to bring MHC’s behavior to people’s attention. While I wish MHC was the only institution of higher education behaving in this manner, it is not. I scanned my own college’s website and discovered as recently as 2008 students with disabilities were experiencing trouble getting what they needed. I am certain it is happening at other schools as well. I also know there must be schools doing it right, right?

You Can’t Play

Whenever I leave my house – and I do mean whenever – something will happen that I interpret as “You can’t play.” These are events or circumstances that by their nature exclude me because of my blindness. Each and every incident is a reminder that I do not quite fit in the world, an octagonal plug in a round hole fitting, but with gaps all around.

These acts that speak louder than words fall into some broad categories. “You can’t play unless you figure out how” is the least irritating possibility. When I first moved into my apartment complex, I discovered the mailboxes were in a grid without tactile numbers, so in order to “play” I had to learn my location and subsequently count rows and columns when I check my box.

Other examples include:

* intersections with crazy traffic patterns and no audible walk indication
* board games that I can’t independently play being brought out at parties
* cafes and other public places where furniture is randomly relocated sometimes in walkways
* hotel room doors without tactile numbers

Eating out with friends, wait staff often sets a print menu on the table before me. This says, “You can’t play unless you get help,” and in this particular case has the added message of “and I am not going to acknowledge that may be the case.” Now my friend is put in the position of having to read the menu. Equally irritating examples include:

* receptionists at doctor’s offices handing me a clipboard of print forms
* bathroom doors without tactile indications of gender
* anything that comes in my mailbox not from Mom who always brailles it
* electronic appliances without accessible manuals online
* inaccessible websites
*stores of all types
* any organized outing where a car is required to attend

Musicians often tell stories before performing a particular piece of music. Sometimes they use visual gestures or facial expressions to communicate meaning they do not otherwise verbalize. This is a case of “You can’t play and there’s nothing to do about it.” Additional examples are:

* anything from the above category in the absence of a person to assist
* television and movies without descriptive audio tracks
* elevators without tactile markings when you are alone
* * attending a meeting where print is used to convey information and never verbalized
* any service person refusing to help
* signs of all types because I don’t even know they are there!
* ATMS that don’t talk
* board games I can’t even play with help
* promotional offers where you must be sighted in order to avail yourself of them

Finally, we have the most infuriating category. I have gotten on planes with only a cane that folds in half and it has been taken away from me in the name of safety. To me, this says, “You could play, but I’m refusing you the thing that makes it possible.” This also happens when:

* a website I used to be able to use is redesigned making it inaccessible
* cell phone manufacturers and service providers stripping away features that make the phone more accessible so they can use the space for graphical interfaces or advertising
* refusals to make modifications because they would be inconvenient
* online information that becomes inaccurate because it’s not updated

As the above lists indicate, circumstances routinely tell me I can’t play. Each is angering, emphasizes my difference as a negative, and furthers my feelings of isolation.

Here’s the thing: these continual messages of exclusion do not have to exist. Most have solutions and often those resolutions are not costly only requiring a desire to banish such messages and/or creativity to find ways of accomplishing this.

I could be utterly obnoxious slighting people for their lack of will or intellect, but I honestly believe the problem is more basic. People are simply unaware that their acts, words, or ways of doing things send a message beyond what they intend. However, I do believe individuals should open their ears and minds to hear the impact of what they say and do. Hiding behind ignorance as an excuse works exactly once, then I believe people should make the effort to educate themselves.

Now, for a few examples of “You can play too.”

* people who smoothly interject information about visual queues they’ve used
* wait staff who apologize for the lack of an accessible menu
* Braille or tactile markings on restroom doors
* offers to help find a ride for anyone needing one to an announced event
* pulling out a board game everyone can play without needing excessive help
* planning events in locations with ramps etc and noting it on flyers
* acknowledging lack of access indicating you have at least thought about it
* making requested accommodations that simply inconvenience you
including a disabled person by directing a comment or question to them
* people who provide what you need in the same manner they offer a guest a drink

I Declare Myself a Potato

At a college interview, I was asked, “What vegetable would you like to be?” My response of potato was weirdly appropriate and by the end of this entry, you will understand why.

The disabled community is composed of people with a myriad of conditions including those that are physical, psychological, behavioral, medical, or related to learning. Often these subgroups, and even contingencies within them, experience disability in differing ways. DISTINCTIONS such as when the condition was acquired, the social stigma attached to it, and whether the limitation is visually obvious become demarcations of major significance dividing the larger community. Controversy abounds none less polarizing than that made between physical disability and chronic illness. Possessing both within one curly-haired, 120 pound body, I have a unique perspective on their similarities, differences, and interplay.

Both chronic illness and disability can be described as conditions limiting two or more areas of life functioning. They must be taken into account when engaging in specific activities, alter how goals are achieved, and require accommodations. Furthermore, the non-disabled community’s reactions of pity, discomfort, and avoidance are mutual so both groups share the experience of being outsiders.

On the other hand, chronic illness is closely linked to the medical world since the condition is based upon health categorization. Within the disabled community, it is an accepted truth that group membership is a result of societal barriers not medical status. By declaring blindness a different way of functioning, it can be divorced from medicine whereas separating chronic fatigue from the medicinal seems impossible. In addition, accommodations can reduce physical disability to the level of nuisance while nothing can mitigate the impact of chronic pain or lack of energy.

Finally, the temporarily able bodied have a different understanding of health limitations as opposed to disabling conditions. Some argue TABS get chronic illness better and others argue TABS comprehend disability in a superior way. “I can’t see” is easier to identify with than “I have chronic fatigue.” On the other hand, illness is more easily accepted as a valid limitation not needing explanation whereas blindness often requires justification. “I can’t go out to the dance club” is easier to understand when the reason is chronic illness. Blindness requires additional explanation — the music volume is overwhelming making navigation impossible.

Personally – and I declare myself an expert in this—I find physical disability and chronic illness to share much and distinguish themselves from each other in only minor ways. While all the disparities I listed are valid, the matter of degree is small especially when compared to the differences both share in relation to the non-disabled. It’s russet versus red potato not spud versus biscuit.

For me there is one notable exception– the question of a cure. If offered sight, I’d shrug and suggest it be offered to someone who had a stronger reaction than “whatever.” However, if somebody could wave a magic wand and chronic fatigue would vanish, I’d ask where to sign up. It boils down to the issue of accommodation. No matter how hard I try or what techniques I employ, chronic illness will always limit my ability to accomplish things. Blindness means I cannot drive a car, become a pilot, or be a brain surgeon. Chronic fatigue means I cannot have a career that requires a 9 to 5 kind of life. In this way, it’s white or sweet potato versus biscuit.

I find it crazy-making when these two “groups” attempt to distinguish themselves from each other. It reeks of the same flawed thinking that TABs use to separate themselves from disabled folks. It also plays right into the hands of power politics because we are so busy asserting our differences that we neglect the more significant battle for political currency. Politicians offer us a pie and the various disability factions fight over the size of everyone’s wedge instead of demanding a bigger pie. Far better to find our common ground and stand upon it united against those who would malign the spud.

Rather than debating the merits of red versus white, boiled versus baked, I wish we, the disabled community, would focus on bigger issues like negative stereotypes, ignorance, and whatever causes TABs to think of us as a different species. After all, potatoes and biscuits are both carbohydrates and there is such a thing as a sweet potato biscuit, right?

Good Today, Bad Tomorrow

Something is happening to me, good in the short-term, but leading to a problem of probable epic proportions down the road. In the middle of last week, I realized I want to be alone. Over the next few days, I discovered that I was actively avoiding human contact. Apparently, social me was unable to find happiness or peace unless isolated.

I have been here before, more at peace when it is just me, books, tea, and a soft blanket. It is necessitated by a lack of energy so profound that I am left choosing between survival and everything else – tending my emotions, trying to be a better person, and my social life amongst other things. While my choice of survival is fairly obvious, if I do not pay attention to my social life, it has an unfortunate tendency to crumble.

With no other viable options and a social life disintegrating, I avoid the entire mess. As counter-intuitive as it may seem, social interactions act as reminders that there is a world out there I currently cannot engage. Instead of constant reminders of this painful truth, I create a world where I can find pleasure in activities done solo.

Thus solitude has a few things going for it. It is easy to maintain, has no risk involved, and relies upon nobody to say or do a thing. I can fill my world with books that either thrust me into a reality imagined by another or, in the case of the memoirs I’ve been reading, allow me to feel a sense of kinship with other disabled people. If I select the right reading material, there is also laughter. When nothing else feels possible, this is not an unpleasant fate.

At its core, I worry this is a case of self-delusion: If I can convince myself this solitary existence is enjoyable, then I do not have to feel painful isolation. Perhaps it is more a case of a highly-evolved coping strategy. Maybe I am finding very complicated ways to convince everyone including myself that this is not depression. Possibly I’m afraid of confronting what my social life will become when I cannot nurture it and others, for whatever reason, do nothing. For better or worse, I do not have what it takes to cope with loneliness, so I pick the easier path of isolation.

Now for the inevitable problem I will encounter. Sooner or later energy will return to my body and then this world of isolation will no longer be a necessity. Instead, I will be hiding in it, avoiding the hard work necessary to reenter the human race. Life outside my four walls means interacting with idiotic non-disabled people who make me want to scream, constant reminders of how worthy of ignoring many find me, and all the typical challenges of social interaction. It necessitates balancing my need for human contact with my body’s requirements. While I find other people to be energizing, there are costs to a social life, and leaving comfortable isolation to reshoulder those challenges is daunting. I will have to find the clarity to realize it’s time to reenter the world and then the strength to do it.

Were a social life to fall from the sky into my lap, I would not throw it away as long as it did not require effort on my part and it possessed a frequency of human contact that would not leave me longing for others. Unless people are a consistent, reliable presence in my life and do the lion’s share of the work, it will simply be painful reminders of what I have temporarily had to forgo. What people believe they are relieving with a random call or visit will in actuality be intensified.