Sunday, December 25, 2011

Dickens Knew There'd Be Days Like These

A year ago, I wrote Kid O Is CPed, or How Crippling Language and Sentimentality Dehumanizes Disabled Children and Adults in response to a Twitter conversation and blog post by Ira Socol about Dickens's portrayal of Tiny Tim. When Tiny Tim says to his father that he hopes people will notice him in church, he does not wish to be seen as a pitiful cripple. Instead he wants people to remember how wonderful and loving God is.

Back when I was in my twenties, I applied for jobs with various non-profits. At one point, I sent my resume to a blind ad. I received a call from Muscular Dystrophy Association telling me I could interview with them I turned down the opportunity because I did not want to be affiliated with an organization that both sentimentalized and exploited children. Even though they no longer have Jerry Lewis as their pitchman, I doubt their emotionally manipulative fundraising tactics have changed.

After having Kid O, those feelings intensified. I feel that special needs and disabled children are often treated as lesser beings. They are either seen as objects of pity or derision or as beatific or magical beings. Parents of special needs kids are either venerated as saints or branded as criminals, with little in between.

When parents are seen as saints, we are often offered help we do not ask for. As I recounted Kid O, Comedic Queen, Traveling in Style :

Subway steps are tricky enough without someone unexpectedly lifting up the bottom half of Kid O's stroller. Without a word, a hand would dart out, followed by a second hand and then a torso would appear. All followed by the friendly face of some well meaning human being. And, all too frequently, I'd have to tell that friendly, well meaning person to let go. Many would let go right away, but others would only respond to me harshly insisting. All too often a look of hurt would register on their faces. They were presuming to offer help that I never requested and were throwing me off my rhythm. One false move and I could have tumbled down the stairs. And Kid O with me.

I never intended to hurt anyone's feelings. It is awkward to decline help, even as tactfully as possible, from people who have good intentions. I don't want to be an ingrate. I simply want to decide for myself what assistance I want and need. If people want to offer help, it would be great if they were to ask what I need or want. Or tell me what they have available or can do and then I can choose.

Recently Kid O came home with a brand new backpack filled with school supplies. I called up the high school to see if she had gotten this by mistake, and was informed that all of the low incidence kids received the same backpack loaded with the same supplies. Given that a large percentage of the school population are kids from low income families, I would think that it would be better if this donation were schoolwide. Instead these Special Ed kids are singled out for what seems to me to be the dubious achievement of being in the low incidence program.

If I were to point out to service organizations and these companies that they mainly do this to alleviate guilt, they would be taken aback and perhaps even angered by what they would perceive, and, rightly so, as cynicism on my part. But the fact is that this type of charity is demeaning as it perpetuates the stereotypical thinking of "poor little crippled kid" or "poor little special needs kid." I do not doubt there are good intentions, but, first and foremost, this is more about the donors feeling good about themselves than it is about whether or not the donations are what is wanted or needed by the individual, or, by extension, their families.

The justifications for this kind of charity has the danger of allowing generally reasonable people to conclude that, paradoxically, sheltered workshops are a perfectly fine destination for special needs children. I would ask such people if that outcome would be acceptable to them for their ablebodied and/or "normal" children. More likely they hope their children will have a good education and earn a decent living doing work they enjoy. When a segment of the population is treated like lesser beings, even in the name of charity, then it is easy to segue from that to exploitation. Furthermore when I feel like an ingrate after receiving gifts or donations neither wanted nor needed, that indicates to me that something is awry.

One year before Thanksgiving Kid O came home with a laundry basket full of food, including a turkey. While it was true that my husband was unemployed at the time, I felt shame and anger. We had already bought food for Thanksgiving, and so there we were with two turkeys as well as food suited to our tastes and food that was not. I was mortified that anyone would think we were a charity case. I never said anything to anyone at the school, because I knew that everyone meant well. They presumed they were helping us feed our family when in fact a lot of what they did was actually wasteful. We ate both turkeys, but I still wonder why no one bothered to ask us what we wanted since they were doing this with our family in mind.

There is no dignity in receiving this kind of a gift. There is no way for recipients to save face. And, when a laundry basket full of food comes on the wheelchair lift the Wednesday afternoon before Thanksgiving, there is certainly no way to refuse it. No way to say "please give this to someone else." I am certain that members of that service organization who donated that Thanksgiving dinner felt really good about what they had done. To me, however, that act of charity felt thoughtless and exceedingly inconsiderate. I did not feel grateful.

Rabbi Moses ben Maimon, better known as Maimonides, established Eight Principles of Giving or Tzedakah. According to the Wikipedia article on tzedakah the eighth principle of giving is:

8. Giving "in sadness" - it is thought that Maimonides was referring to giving because of the sad feelings one might have in seeing people in need (as opposed to giving because it is a religious obligation; giving out of pity).

which is the most objectionable reason to give to anyone. That is precisely why I would ask members of a service organization to question the purity of their motives. When a person is given to out of pity, it reduces the person to an object rather than as a person who has feelings, hopes and aspirations. In this instance both the giver and the recipient are diminished by this action.

Maimonides' first principle of giving as mentioned in the same Wiki article is:

1. Giving an interest-free loan to a person in need; forming a partnership with a person in need; giving a grant to a person in need; finding a job for a person in need; so long as that loan, grant, partnership, or job results in the person no longer living by relying upon others.

Or,if you prefer, from Honorable Ways to Give Charity

1. The highest form of charity is to help sustain a person before they become impoverished by offering a substantial gift in a dignified manner, or by extending a suitable loan, or by helping them find employment or establish themselves in business so as to make it unnecessary for them to become dependent on others.

This way of giving is the most honorable because this allows the special needs kid to become a functioning member of the community and keeps dignity and self-worth intact for them and for their families. The only reason to not consider wants and needs of a special needs individual is because you presume they have lesser mental abilities and will either not know the difference or will be grateful for whatever they get. That is precisely why I feel resentment when I am the recipient, directly or indirectly, of such charity.

Members of service organizations would not want to be considered charity cases any more than I do. If service organizations want to make donations then those receiving the donations should have some say as to what they wish to receive. Ideally there would be a sense of collaboration. Members of service organizations ought to be willing to donate (within reason) things an individual or families need rather than what they think they need.

A week or two ago, our yoga instructor called me about an email she had received about a non-profit receiving a lightly used Hoyer Lift. This email came from the woman who ran the non-profit. This woman's family had their own Hoyer Lift for their daughter who, like Kid O, has severe cerebral palsy. I called the woman and we made arrangements for my husband to go and pick the lift up. That was something that we have needed for quite some time. I am truly grateful for this lift. Because this was done in a collaborative manner, there was no sense of inequality. No sense of being beholden to or subordinate to anybody.

What Moses Maimonides is essentially talking about is the basis for the gift economy. If a special needs child is given equipment or technology that will better ensure their independence, then instead of becoming a burden on society they have the potential to benefit society themselves. By giving my husband and I the opportunity of getting a Hoyer Lift, we can feel more at ease at hiring respite care. We are now less worried about someone getting injured when having to lift Kid O for instance. And I will not always have to ask my husband to help me.

Kid O cannot use school supplies because her hands are too spastic, and her fingers are not sufficiently differentiated.. Had I been consulted about this donation, I could have been in the position of suggesting that this company give this to someone who could use it.
Instead I have to figure out what we are going to do with these things. Kid Q has plenty of pencils, markers, etc, and so I do not feel comfortable keeping these. Perhaps when school resumes after winter break I will talk to Kid O's teacher and see if we can regift these
to the classroom. The thing is I shouldn't have to be in this position to begin with. I didn't express a need for this.

Had anyone bothered to ask me, I would have thought of all kinds of things that I could have used or that Kid O could have used. A communication device, for example, that doesn't require staff, would make it possible for Kid O to gain at least a modicum of independence and provide her with a way to take her place within the community That's the kind of assistance I'd be grateful for, and for which I'd echo Tiny Tim's sentiments, "God bless us, every one!."

Wednesday, December 14, 2011

Mister, I Come Weaponless

Mister, I come weaponless.
No coy mistress am I.
I pick pearls from your beautiful pink heart.
I place them in a pristine basket.

How can I tell you, mister,
you have no reason to fear.
How can I tell you mister,
You have no reason to doubt.
How can I tell you, mister,
I am who I say I am.
No more. No less.

I tell you, mister,
I am your haven.
I am your harbor.
I am your inlet.
I am your every port.

I am shatterproof.
Even so I am filled with shards
and other sharpnesses.
Sharp tongue, soft heart.

I embrace a multitude of shimmering yous.
Mathematically you are awe's sum.
I have no language, mister,
to explain that particular equation.