Friday, January 10, 2014

A Helluva Time

Yesterday I went to an all day meeting and because I wanted the greatest degree of mobility I could have, I arranged to take my power chair. Somewhere along the decision making process I came to the idea that Joe would just drive me there and make sure I got in and from there I would rely on my colleagues for any help that I needed. After all the only things I would need were: help raising and lowering the foot pad, getting things in and out of my bag and holding doors when necessary. Not terrifically intimate needs.

I spoke with a couple of my team when I arrived and everyone, to a one, was more than willing to help. They were both kind and supportive - I couldn't have asked for a better response. So what I'm writing here today is not about them, it's about me.

I had a helluva time asking for help.

I ended up asking 3 times in the day for assistance. For my maximum comfort, I would have needed to ask for assistance about, maybe, ten or twelve times. But I simply couldn't ask, and therefore only asked when I really needed help. I had a strong internal battle with this.

I know that asking for help does not diminish me. I know it doesn't. But why then, does it feel like it does.

I AM NOT DIMINISHED ... screams my mind.

I feel completely diminished ... whispers my soul.

In those three times I asked for help, I saw that the help was given willingly, without much comment and without any, thank God, fanfare. It was just given. But I found myself looking to see if the willingness was real, if the task was even slightly bothersome, if afterwards I was viewed or treated differently. It was real, it wasn't bothersome and I wasn't treated differently. But I felt different.

In all that I realized the absolute vulnerability that comes with asking for help. Besides the obvious worry about vulnerability in the moment of receiving care, there are all the social ramifications of being someone who needs assistance from someone else. How am I seen to others? How do I see myself?

When Joe picked me up and asked me how the day went, I didn't tell him any of this. We ended up having other things that needed talking about - and I knew that I needed to think this through.

I am disabled.

I need help sometimes.

Those two things, for me, are givens. But clearly I'm not at peace with that - I thought I was, I am comfortable in getting help from Joe. However asking for a bit of simple assistance from people wanting and willing to give it ... that was sheer, almost, torture.

I guess there's growing yet to do ... RAH!


Anonymous said...

That's really very thought provoking. Vulnerability tends to do that; it makes you think...

I have to ask for help sometimes. For different things. Sometimes when I am with you, or when I am reading things you have written I feel so very disabled - because I'm not as smart as you - I'm not on the same level of ability to perceive insights or to come up with ideas, or to make things happen. Or to understand and empathize with others.

I am not your equal on so many levels. The only thing you have over me that I can see, is that I don't need to ask anyone to raise my footrests, and you do. Big deal. I want to laugh and say jokingly, "You can't have ALL the advantages". And then I wonder, "Am I just not getting it?" I don't know...

When you ask me for help, and it's only been a time or two, I am always grateful. It puts us on equal footing somehow. It's a human need to be "needed". Some of us need it for one thing, and some of us need it for something else. But needing help and being able to help is what connects us as human beings... I feel sorry for people who never seem to need help - who can do it all on their own. They are missing out on something very deep.

Alison Cummins said...

We’re all paying it forward.

I like TAB — the Temporarily Able-Bodied — to refer to those of us who don’t have a physical disability. Because if even we don’t now, we will eventually.

One day I am going to need to ask someone for a hand. I will need to call on the memories of those times I willingly lent someone a hand without fuss so that I can ask without too much drama: I will be able to believe that help is offered willingly because I know that when I offered it, it was willingly.

Each time you ask someone to lend you a hand you are helping them rehearse for when it is their turn to ask.

Anonymous said...

Thank you for this post. It was extremely helpful for me, as someone who is at times in a position of supporting people with disabilities. I teach college, and each semester I have a handful of students eligible to receive disability accommodations, and yet so often they don't ask for them. And the attitude at the university seems to be generally that the faculty should not get involved, since the students know what they need and its their responsibility to request it. And I don't want to overstep boundaries or make assumptions by trying to "help" when my help isn't desired.

But this gets me thinking - I wonder if it would be worth being more proactive about it, taking the initiative to offer - or at least ask about - whatever accommodations they might want, rather than to wait for them to come to me. I wonder if this would be more comfortable for the students who may hesitate to approach me for the same reasons you hesitated to approach your colleagues.

Anyway, I'm sorry that was such an uncomfortable experience for you, and thanks for sharing it with us.

Andrea S. said...

As a deaf person, even in cases where some individual (non-signing) people may be easy enough to lipread, it is a real challenge to follow a group conversation. (Of course if some participants are harder than others to lip read that compounds the challenge). People often say they are willing to repeat, but don't seem to grasp that I don't just need a sentence here and there repeated, sometimes I need entire conversations repeated line by line several times before I'm likely to grasp it. That, or I need someone to help jot down a written abbreviated transcript or detailed summary of what is being said.

For me, I find it very hard to articulate this need, not because I feel it diminishes me, but because I have had so many experiences where people have acted as if I was asking something very extreme and unreasonable when I ask for even more minor, trivial forms of assistance. And asking for someone to write down entire conversations (even in truncated or abbreviated form) is more than a trivial form of assistance.

I am slowly trying to teach myself to speak up for my needs more often, but must always confront the fear that people may balk at the whole idea that anyone should go to any trouble to ensure my communication inclusion and react with anything from disdain to hostility to whatever. I do find that at least some people respond positively once I get up the nerve to say something (though there are always those who do not).

You're right, no one is diminished by needing help from others, or needing to articulate this help, or by needing certain types of assistance that most people don't ordinarily need.

I wonder how much of this feeling diminished might be from fear of other people's reactions, or perhaps the messages that many of us grow up with that there are certain things that adults just do independently (and that you aren't adult if you need help with them).

Yes, everyone needs help sometimes. What makes the issue of "needing help" more complex for us people with disabilities is that some requests for assistance are more socially accepted than others. Needing help with a door when your hands are full = socially acceptable, people may offer without needing to be asked. An adult needing help with cutting up his/her food = not as socially acceptable, people unfamiliar with disability may mentally resort to the only other model they know for how a person can legitimately need what they perceive as "basic" kinds of self-care assistance, which for most people means children and infants. And because we stigmatize children and infants (yes, they can be adored, loved, and stigmatized all at the same time), the stigma rubs off. Perhaps this could be some of where the sense of "diminishment" comes from?

Anonymous said...

Look at it this way: if YOU can help, you do.

Give other people, the ones who have already said they are willing, the same you would offer to someone who needed your help: a quick request, with the willingness to put your request aside/delay it if you can't be accommodated immediately AND you can wait.

It is incredibly hard to ask for help - and galling to be the one who needs it more often than others - but it is also reality, and you want to help the world move toward a place where people matter-of-factly ask for help when they need it, and other people give it when at all possible, without it being a huge deal.

Kind of like a good mother with small children. Yes, you're sometimes dependent. So what?

Keep thinking at it - being fully human is a life-long journey. Thanks for taking the rest of us along with you - you are an advocate for more people than you realize.


CathyV said...

For so,e reason, this is the blog that has affected me more than any...a bit of heartbreak

wheeliecrone said...

I have to admit that, for me, asking for help is the most difficult part of having a disability.
It is more difficult for me than pain.
I have had the opportunity to work on this issue, and I can ask for help, but it is far and away the most difficult part - for me.
Having said that, I must also say that people are mostly wonderful about helping, when asked. I have never had anyone refuse to help me. After 12 years as wheelchair user, it has become a little bit easier to ask for help, but only a little bit.

Anonymous said...

We ALL need help at times. I agree though, it is so hard to ask. Why? Why do we care so much about what other people think? Is it our society? Our upbringing? I like the TAB reference. Fodder for thought!

Glee said...

Yep. For all of us, til we die, Dave :)