Tag Archives: inclusion

Changing Perspectives

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I was fortunate to be invited to the recent White House policy briefing for the bisexual community. Even better, I was able to attend thanks to help and support from a variety of people.  (You know who you are and your help is appreciated.)

While in DC, I stayed with Mike and Tina, friends from high school.  We all trooped off to a

weekly lunch that always follows a faith-based gathering – the equivalent of coffee after church. In general, this collection of individuals is progressive and has a sense of social justice.  Over the years, Mike has told me a great deal about this caring and supportive community where he has invested so much of his time, energy and heart.  I was eager to go forth and meet everyone.

It did not quite work out that way.  I was a part of one conversation, introduced briefly to another person and mostly simply absorbed the vibe.  Oh, yeah, and Camille and I displaced people from their seats not because I asked, but because they decided I needed the seat more and went elsewhere.  (I can’t be sure, but I think the table had empty seats, so I felt a little bit like Typhoid Mary.)   In other words, it was my typical social experience.

Later, I learned this is not the way this group tends to treat new people.  Fortunately, the circumstances present a rare opportunity to hear from someone familiar with the group who can comment upon the ways their behavior strayed from their normal patterns.  Mike, who has helped and supported this blog for years, has been drafted to offer up his observations.  I shall yield the floor to him, but I will reclaim it to discuss one factor I think contributes to the quality of my social experiences, which other events during my DC trip highlighted so glaringly that even the blind person noticed.

 

 

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

CripFace

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No, it’s not some unusual facial expression that people with disabilities have nor is it a reference to an outer layer or surface. Think blackface, popularized in the 19th century as a means for white actors to portray people of color in theatrical performances by using makeup to blacken their faces, as well as wearing specific costumes and adopting certain mannerisms.

The term cripface has gained popularity as a means to refer to actors without visible disabilities who play characters with visible disabilities. Obviously, it is meant as a condemnation of the practice by those who find it insulting, disempowering and marginalizing.

Hollywood has a tendency to use actors without visible disabilities to play parts calling for a visibly disabled character. The practice is so common that, except in the case of Michael J. Fox or Marley Matlin, you can more or less assume a character with a disability does not have that disability in the real world. (“Growing Up Fisher”, “Joan of Arcadia”, “Riding the Bus with My Sister”, “The Piano”, “My Left Foot” etc.) In fact, chances are you can name more characters with disabilities than you can actors with disabilities.

The reason this happens is a chicken and egg explanation. Actors with disabilities are not cast in roles, unless the character specifically has a similar disability, so they do not get a lot of work. This means they have trouble gaining enough industry admiration to be cast in roles that include a disability. Instead, established talents with name recognition are sought to play characters with disabilities.

The practice is complicated by the fact that disability is often still utilized as plot devices to elicit certain responses from the audience, based on stereotypes and reliant upon inaccurate distortions of what it means to live with a disability. There are not strong, happy characters who happen to have disabilities filling the pages of novels or wheeling across the silver screen. If disability is a characteristic, it is a noted trait given significant attention and composing a major part of the plot because no creative gains would be made by a character with a disability who is “normal.” And, of course, if you have a character with a visible disability, that disability must somehow advance the plot. Thus, there are villains with scars, paraplegics bravely shouldering the tragedy of their situation and blind lawyers who made it through law school without anyone realizing they were blind. (It’s a major plot point in “Growing Up Fisher” and also impossible.)

Interestingly, blackface is attributed with both the proliferation of harmful stereotypes and bringing African-American culture into the mainstream. More than fifty years after the practice faded from the spotlight, the stereotypes blackface perpetuated are alive and well in our society, clearly demonstrating the harm the practice caused. Yet, there is no way to know what benefits the practice may have propagated, such as influences on music.

Proponents of casting people without disabilities in roles calling for disability often argue that at least characters with disabilities raise the public awareness of the existence of disability. Whether accurate or not, mainstream society is being exposed and how can exposure be bad?

Personally, I am not a fan of cripface when it does nothing to advance an accurate portrayal of disability. There’s no reason, other than actual storyline, to make a villain scarred, unless you are relying upon a noxious stereotype about ugly meaning evil, so don’t do it. However, if a role is based on a realistic portrayal, then anyone should be able to play the role. And, of course, the opposite should hold true. An actor with a disability should be able to play a role that does not specifically call for a disability. Why can’t a wheelchair user be an extra? For that matter, why couldn’t a “Gray’s Anatomy” patient have a prosthetic limb without it being a plot point? When disability is reduced to a characteristic that some characters have and some do not, that sometimes is relevant to the plot and sometimes is not and that doesn’t get an actor included or excluded from a role, then I won’t have a problem with cripface because it will no longer be a noteworthy event. It’s only a problem when prejudice, stereotypes and bigotry hold sway over Hollywood instead of a more balanced view of another facet of human variation.

 

This entry was written as my contribution to Blogging Against Disablism Day 2015. For some interesting reading, check out what others have contributed!

An Inconvenient Truth

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  • 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

Pride with a Side of Alienation

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Last July, I attended a Pride rally which flooded me with a wonderful sense of community, while simultaneously left me feeling alienated. When it comes to things like rallies, I often experience this same mix. Attending to enjoy the sense of community and common purpose, I tried to soak up the vibe only to ingest a nice dose of “But You Don’t Count” along the way.

I know the event was a rally about LGBT pride, focusing on issues that impact the non-heterosexual population and meant to highlight our bonds of community and common purpose. If everyone had stuck to LGBT issues exclusively, I might have not felt like “other.” However, from issues of racial equality to immigration, border security to employment rights, many speakers addressed other “liberal” causes. Lists of marginalized groups who we should stand with in their fight for equality were mentioned. Not once did disability pass the lips of any speaker. Not once.

As I sat in the “ASL” seats – because apparently only Deaf people need accessible seating – I listened to one man talk about LGBT youth. He rattled off one statistic about how many LGBT young people report hearing negative messages about their identity from the mouths of public officials. Suddenly, it dawned upon me. We think of negative messages as damaging. How harmful, though, is that which is left out entirely?

When George Takei asked us all to stand, face the flag and recite The Pledge of Allegiance with him, I had no idea where to look. As Norma Chavez-Peterson of the American Civil Liberties Union asked for us to join in the fight to help all oppressed people, those with disabilities were left off her list. A universal message of love and social justice permeated each speech I heard, yet not one person managed to identify people with disabilities as one class of individuals needing support in their fight for equality.

What message does that absence send? To me, it says that I am not thought of when issues of social justice are considered. My marginalized group is not one deserving of the same help and solidarity. I don’t matter enough to be included.

The ways people with disabilities are divergent from other marginalized groups is often the reason given for why we are not included in the list of social justice causes. We need special things that cost money, we are unable to do stuff and you can point to some substantive difference engendering more negativity than skin color or gender preference. Our difference is not viewed as diversity, making us separate from other social justice causes. And, as we all know from school integration, separate is inherently unequal.

So, as I tried to connect with my LGBT community, I had to stop thinking about my identity as a person with a disability. I could either be a member of the group being celebrated or a member of a group not thought worthy of mentioning. Very healthy for my self-esteem.

At least there is an honesty in all this. Should someone have thought to include people with disabilities, it probably would have been in word but not deed. So, for the lack of hypocrisy, I am grateful.

What He Said

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I could not have put this better myself if I tried for a week.

http://www.planet-of-the-blind.com/2014/03/the-able-bodied-blues.html

The Cost of Safety?

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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.

WHAT WE MISS

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In “Flowers for AlgernON,” Charlie Gordon, a man with a cognitive disability, undergoes a procedure that triples his I.Q., only for the experiment to ultimately fail, resulting in a return to his initial level of cognitive functioning. I am reading a novel in which a character with Aspberger’s Syndrome declares Charlie “stupid” for doing it in the first place because “now he knows what he’s missing.”

People born with a disability never experience life without the physiological limitations of their condition and common wisdom is that they never know what has been lost. While I agree they never know what they lack in terms of being sighted or neurotypical or hearing or possessing all limbs or whatever, I would argue that there is a vast amount being missed that such individuals are clearly, concretely and excruciatingly aware is not present – the social perks of normalcy.

Think about this for a moment. People with invisible disabilities – ones not known to others unless they are specifically told — struggle over whether or not to reveal their condition. Why? It cannot be because of the limits of their condition for those are present no matter what. Rather, it is about how others will respond to the new information. It’s about social consequences of possessing the trait of disability.

Anyone with a disability at some point watches those without a disability as they move through life. It’s on our televisions, in our books, on the bus and even in our own families. Non-disabled people are granted an ease in living from social interactions to dating to becoming a parent to joining a group, all because they do not possess a specific trait. They have done nothing to “deserve” this effortlessness nor do they usually realize its presence. It’s expected, counted upon and presumed to never be different.

Meanwhile, people with disabilities tend to live a different sort of life. All that ease and freedom and smooth sailing is denied them not because of the functional limitations of their condition but because of the existence of the condition.

And we know what we are missing. Though we might eventually reach the same destination, the journey will not be the same.

And we will watch people no better or worse than ourselves enjoy social lubrication we can never experience.

And it will be because we possess a trait. It will not be because of the consequences of the trait. It will be the mere presence of it.

Forever, we will be on the outside looking in. Forever, we will know what we are missing.

What I cannot enjoy because of the limits of my visual abilities is an insignificant fraction of what I know I am missing. If I could secretly see everything without anyone ever knowing it – if I acted blind though I could see – I would not feel like I suddenly gained some lost thing. What I will forever miss has nothing to do with not seeing and everything to do with what I do not receive because of blindness’s simple presence.

Here’s the best way I can explain it to non-disabled people:
It is the bar of amazing chocolate on a shelf high above your head that you are unable to reach. Meanwhile, many other people come by, take down the bar of awesomeness, have a piece they devour before you with obvious enjoyment and then replace the bar again beyond your ability to grasp. Over and over again. Your entire life. Maybe with a tiny nibble just often enough so you can never possibly forget the delicious flavor.

Eye Contact

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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?

What’s the Opposite of Pity?

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I’ve been reading about race relations in 1962 Atlanta, Georgia, and repeatedly hatred has been the focus.  In fact, when it comes to issues of diversity based on race, gender, gender identity, sexual orientation, ethnicity and religion, hatred is one of the dominant emotions.  (When the prejudice manifests itself in an act, we call it a “hate crime.”)  The way bigotry toward these marginalized groups is combated involves fostering states opposite to hatred, such as kindness, compassion and understanding.

On the other hand, hatred is not an emotion I associate with the prejudice I experience as a person with a disability.  Pity is the primary culprit and unlike hatred, it does not have opposites that come to mind which can be promoted within the hearts of people without disabilities.

To make sure we are all on the same page, let’s open a dictionary.  Pity is defined as “sympathetic or kindly sorrow evoked by the suffering, distress, or misfortune of another, often leading one to give relief or aid or to show mercy.”  Among its synonyms are words like compassion and commiseration.  While perhaps not a pleasant emotional state, pity is not, unlike hatred, given the stamp of social sanction.  An act springing from pity is considered an act of mercy, making it very hard to quash.

Looking at the antonyms of pity, we discover three broad categories.  There are the good words, the bad words and the neutral ones.  Opposites to pity with a negative bent are cruelty, harshness, hatred, meanness, mercilessness, disfavor, malevolence, unkindness, and disdain.  Slightly more palatable are disinterest and detachment.  The positives are cheer, happiness, joy, advantage, blessing, and good fortune.

Think about this for a moment: To combat racism and sexism, we encourage states opposite to hatred.  In the case of disablism, to promote the opposite of pity would either involve fostering something like cruelty or hatred, working toward indifference, or trying to somehow convince people that disability is good fortune.  That is a lousy, impossible set of options.

It’s far clearer to say, “Don’t hate someone.  Feel compassion, kindness and love,” than to say, “Don’t pity someone.  Feel…”  What?  Indifference? Cruelty?  I suppose “joy” isn’t a bad idea, except I can’t conceive of how you get a nondisabled person to go from viewing disability as negative to not simply tolerable but joyful?!

Dissecting all these linguistics has given me some new insight into why disablism is so intractable.  In a world where pity is a virtue, how do you eliminate it?  When its opposites range from the good to the bad, what ultimately becomes your goal?  When even the positive states are going to be impossible to sell, in the end what do you have left?

Someone suggested to me that the opposite of pity is confidence.  “I don’t pity you.  I believe in you.”  Faith in my ability as a person with a disability to do what needs to be done is definitely more of a place to start than I had before the suggestion was made.  I’m still not certain, though,  how you get people from the condoned “You poor thing” to the place where they view disability as something other than tragedy.