The Letters G and H

This week's incident is brought to you by the letters G and H for the Gentlemen who tried to Help me.
Normally, I take a bus that leaves from my block, but when I wish to go to a different part of San Diego, I need to walk about half a mile to another stop. It is pretty much a straight course and I cannot conceive of something easier.
Walking the route, I became confused at a particular intersection. Part of the problem was an annoying dog. Part of the problem was my tired, fuzzy brain. Part of the problem was my inability to sort out the traffic sounds to understand in which direction I wished to proceed.
I was approached by an older gentleman who'd been hanging out with his friend about fifteen feet away. He offered help. I said I thought I was alright, but I didn't even convince myself because I was still trying to sort everything out.
As I tried to parse my surroundings, he kept offering help, so I finally agreed. My suspicion was that he wouldn't give me the time and space to figure it out for myself, so I took the path of least resistance. He wanted me to cross in a direction I was not trying to go, which I explained to him.
I thought we were all on the same page and crossed with his friend following behind.
I walked to the next intersection and something seemed off, so I pulled out my phone and used my navigational ap. I was not where I had expected and wasn't certain how to achieve my destination, so I asked a man walking past. He gave me a clear indication of my location and a simple set of directions to follow. Though I missed my bus, I made it to my stop.
I have no idea how I went in the wrong direction. It could have been me. It could have been the gentlemen. Given that I crossed in the way they wanted me to originally, I suspect it was a case of them thinking they knew what was best for me.
One noteworthy fact is that I was not my polite self to the gentlemen, but to the man with clear directions, I was graciousness personified. Sometimes how I am treated profoundly effects how I behave. Another indication I'm human.

Forget Kindness. Try Fairness.

I have always noticed and assess how I feel when someone helps me. Probably at the moment of my birth I had an opinion about the person catching me. In this blog, entries such as Is Approach More Important Than Act? and Why I feel How I Feel are just two cases where I dissect helping behavior and my feelings. Apparently my head is denser than lead because it has taken thirty-nine years to realize it is a question of kindness versus fairness.



Yesterday morning I attended a meeting of people who facilitate the discussion groups at my local LBGT Center. As you might imagine, that room was overflowing with kindness which is why I was shocked at the discussion surrounding a disability issue. A member of one discussion group seems to have a mental health condition whereby they are frequently off-topic and obsessed with Hot Pockets. I pointed out that this behavior could be a result of a cognitive disability beyond the person's control and the facilitator could use some simple techniques to refocus the speaker. The touchy-feely response was that this person needed help and support beyond a peer facilitator's scope and should be directed to counseling as an alternative to attending the group. Accommodating a trait based on disability in order to include a disabled person was rejected mostly because it didn't "help" the Hot Pocket Obsessed Person with their perceived issues. I wanted to slap the kindness out of them and replace it with a sense of fairness.



At first distinguishing between an act of kindness and something done out of a sense of fairness might seem difficult. After all, both are based on an individual's subjective assessment of what act fulfills the dictates of that particular situation. Being kind, however, involves going beyond what is necessary to do that which is exceptional. It is an emotion-based behavior revolving around empathy, sympathy, and sometimes commiseration. In contrast, fairness means simply doing whatever is needed to achieve a desired balance. The differentiating element is whether the person is doing what is required or choosing to do something extra, which means that kindness is optional and subject to personal whim.



When people help me out of kindness, I find myself gritting my teeth. How, exactly, can I take exception with a behavior motivated by such altruism? "Thank you for helping me shop for a gift, but becoming irritated when I wanted a specific color that was hard to find wasn't helpful." That would be an ungrateful response because the person was going above and beyond the call of duty. The same response given to someone acting upon a sense of equity transforms the statement into a topic to discuss and resolve.



I'm not disregarding kindness entirely. Obviously there is a place in the world for behavior based on empathy and a desire to be nice, but when an issue of disability accommodation becomes a matter of kindness, it relegates us to second class status. Suddenly the whimsicality of kindness dictates whether or not we receive what we need to fully participate in society. Far better to have it be an issue of equity that can be debated; a matter of logic and reason rather than the whim of an individual heart.



Today I joyfully participate in the sixth Blogging Against Disablism Day. Many members of the blogosphere, whether disabled or not, are letting their voices be heard on all aspects of what it means to be disabled. Go forth and read their contributions.

I Have A Dream -- For Help

This entry is a companion piece to The Privilege of Preference.

As complicated as help is in the big, wide world, it is even more convoluted in my own mind. In my childhood, I somehow absorbed the notion that people would not like me if they had to routinely help me. I bought into the idea that asking for another's aid is inconveniencing.

In addition, I feel a strong compulsion to be grateful for whatever – and I do mean whatever – help I receive, regardless of whether it's useful or detrimental. Expressing preferences becomes a tangle for who gets to want when someone is helping them get what they need? While I rationally know all this is absurd, still it lingers for things learned over time and reinforced by experience are hard to alter with logic.

Consider some of my routine experiences: I have been walked to the wrong place and left there not knowing it. I have been given inaccurate information because the person thought they could get away with not looking since I can't see them. I have been treated badly because I expressed a preference in a seat at the airport. I was flatly ignored when I told a restaurant their Braille menu was unusable. I was the recipient of annoyance because I wanted something to match a specific color.

What I have learned from experience is in constant conflict with my belief that I should be treated with respect. A strong sense of fairness grapples with the undeniable reality that I need help and getting it must come first. Whenever I need to ask for assistance, all this comes into play.

The stronger my sense of self-worth becomes the angrier I find myself. Disrespect of my needs makes me dig in my heals about respect for my wants. It would be easy to dismiss my conflict, anger, and obstinacy by declaring me emotionally messed up. While that might be the case, I challenge any TAB to experience what I do on a regular basis and not have similar baggage.

Before I even consider asking for help, I run through a mental list: Can I do this myself? Can I find somebody who will barter favors? Who should I ask this time around? How do I ask so that I know they will refuse if it's a hardship? How do I arrange things to minimize the effort someone has to invest? Only after I have waded through all these questions and struggled with my own issues do I seek aid. Even after all these years, it still stresses me out. Heaven help me if it is somebody I've never asked before.

I don't think people realize the thought and preparation that goes into me requesting assistance. Or, well, I like to think they do not comprehend any of it given some of the ways they behave. If people acted as they sometimes do knowing all my prior groundwork, it would say things about humanity I simply refuse to believe.

In my dream world, help is offered willingly with no expectation of gratitude and a commitment to the helpee receiving aid that is what they want and need. In return, helpees would express appreciation and make clear what helping means in terms of time and effort. Assistance would not be offered out of obligation or when resentment is present. A "thank you" would end each interaction.

Help is an opportunity to do something good. Why can't it be that simple? A chance to be kind. A chance to show you care. A chance to be a positive force in another's life. A chance to live up to human potential.

The Privilege of Preference

Helping is complicated for everyone involved. Is the want-to-be helper going to offend the potential helpee simply by offering aid? If the helpee agrees, will they get the assistance they need? Are there strings attached to the proffered help? Will the helpee even appreciate the efforts of the helper? Even if all parties enter into it with the best of intentions, and I am limiting this discussion to those circumstances, there are so many ways it can go horribly wrong.
The number of times I have received help is greater than the sum total of water drops in the ocean. For me, it is a fact of the reality of disability and so too are the consequences of help gone wrong. One particularly thorny aspect of accepting assistance is the role of individual preference and opinion of the helpee. Here I am speaking of personal whim, not that based on concrete need.
For example, I might need help finding a specific item in the grocery store and ask a random stranger for aid. Do I then have the right to drag the person hither and yon in search of the exact brand of butter I prefer? If I have asked someone to guide me, should I be criticizing their guiding technique?
To the helper, a helpee having preferences or opinions can at the least seem like ingratitude. The helper is taking time out of their day to be of assistance, but that is not enough. They must cater to the whims of the person as if once they've agreed to help they have become an indentured servant. A brand of butter cannot be that crucial. The nuances of guiding cannot be critical over a short distance. Shouldn't the person asking for the help take steps to minimize the amount of effort for the helper? Appreciation and not taking advantage of somebody seem like reasonable expectations to have.
At the same time, we all have predilections. In asking for help, has the potential helpee also relinquished the right to likes and dislikes? If I want a red water bottle, should I be resigned to buy a blue one because red meant sorting through the contents of a shelf? Are those of us routinely in need of assistance destined to never quite getting what we want?
Because of my disabilities, I have a highly developed sense of need versus want. With energy limitations, I must focus on what is important. Needing assistance which can be in short supply, I have to set priorities. What I need forms a longer list than that of a TAB. I have requirements related to food allergies, location of objects, alternative formats, transportation, organization for location purposes, websites, and more that are not need-based considerations for the average TAB. All of this boils down to my wants not often appearing on my personal radar.
So, when I have a desire combined with the energy and assistance needed to fill it, I get picky. Maybe it's a sort of territoriality. Maybe it's about the way I must approach my life in order to be a happy person. Maybe I'm just difficult.
When those helping me have behaved as if my wants are not important, I have felt like my need for aid means I should not expect the privilege of preference. This makes me angry because it seems like a reflection of the devaluation I experience continually. My desires being superseded by the convenience of someone who consented to help feels like the same old second class citizen status disabled people have been trying to shatter for years. Do I truly matter that little?
Honestly, I'd rather people said that straight to my face in clear language. "You don't matter as much as I do because you are disabled and need my help." At least then everyone would be on the same page. Instead, people who have consented to help get irritated by me having wants. I am often tempted to ask them if they deny themselves what they want too.
In availing myself of help, I do all the right things – ask for what I need with sufficient information so the person can make an informed choice, say please, express appreciation, and for friends bestow random baked goods upon them. Is it too much to believe what I want should matter?