Disability²

First, Happy Birthday Heather! My baby is 18 today.

We drove up to Rocky Mountain Village, the local Easter Seals camp to drop off my two younger kids for a week of camp. (Heather goes in a couple of weeks). I was in my 12 year old’s cabin, helping her get settled when one of the other girls, asked incrediulously: “are you really her mom?”

“Yes.”

“But you use a wheelchair?” The kiddo was also a chair user. She must have been 10 or 11, although she may have been a bit older. “I’ve never seen a mom in a wheelchair,” she said. She just chattered away for several minutes with many questions. At one point she asked, “could I be a mom?” Clearly her counselor was uncomfortable with the question, but I just plowed headfirst into an answer,

“Of course!” The girl still had a million questions, but I needed to finish settling my 9 year old. My 12 year old was tugging on my arm.

Asiza was nonplussed. She couldn’t figure out why this girl wanted to talk to me so much, and she was more concerned with getting me to just go, go out the door. At almost 13 she isn’t particularly interested in me talking to her friends, but she was utterly confused. She didn’t get what the big deal was.

All my kids were older when they were adopted, but none of them have articulated anything about me using a wheelchair or not. Now, all three of my kids have cognitive disabilities, but this is the kid who would have articulated something. In her case, her bio sister was adopted by a family with a crip mom too, so I think for her, the concept of a disabled parent is completely normal.

The interaction, however, made my heart feel empty. While I am glad it happened, it continues to bother me that girls (and boys) with disabilities grow up and don’t think parenthood is possible for them. I know it happens, but it still makes my heart empty.

So Eden, of course you can. You can be whatever you want to me.

Sabreena Westphal, formerly known as Tiffany Callo, is engaged in a fight for custody of her youngest child. Westphal, whose struggle to regain custody of her oldest children was the subject of a book A Mother’s Touch: The Tiffany Callo Story. Like most parents who have been involved with social services, the birth of a new child brought instant scrutiny from child protection workers.

Reportedly, Westphal has inadequate attendant support, lacks adaptive equipment to allow independence, and has been slow to meet the requirements of her treatment plan, and predictably, her parental rights are at risk. If the facts are as reported, Callo and her partner aren’t ready for her daughter to be home at this time. Putting aside the systemic issues that put Westphal in this situation, there are better options than our current system to provide permanency and security for children, while at the same time allow children to be nurtured and loved by their birth families.

So often, child protection workers admit that parents like Westphal love their children, but that they don’t have the skills to parent them. In response, they terminate parental rights and allow the children to be adopted by another family. While we don’t allow birth families to treat their children as chattel, we instead commodidize the children as chattel for their adoptive families. We need to rethink our child protection and family preservation systems so that they really do act in harmony and in the best interest of children and their families. Parents like Westphal can be a positive and nurturing influence in their children’s lives, and their children in theirs, but our system does not allow that to happen. Termination of parental rights and adoption preclude courts from ordering continuing contact, even when it is in the best interests of children. As demonstrated by what happened with Westphal’s older children, continuing contact with children after adoption is at the whim of the adoptive parents, not based upon what is in the best interest of children. It is possible to develop legislation and public policy that allows children the permanency adoption offers, while at the same time preserving those crucial ties to their families of origin. The more loving resources in a child’s life the better, but our system does not allow for that option.

I will blog a bit more about the myth of best interests, and family preservation in later posts.

This evening I got good news from Marsha Katz in Montana.

Three years ago Livingston, Montana social services decided decided that Geri Glass, a woman with quadriplegia, would neglect her newborn son, Gage, if he was permitted to remain in her care, based solely on their perceptions of her disability. Social services mandated that Ms. Glass never be alone with her son until he was over the age of 12, and that she create a safety plan for his care from infancy through adulthood. They demanded a 24/7/18 year plan to “ensure Gage’s safety.” During one meeting, social services explored placing Glass and Gage into a nursing home, without her consent, and tried to force Glass to give her son up for adoption. Social services told Glass that she was required to have 24/7 attendant care to assist with Gage until he was 12 years old, or she could assign guardianship of Gage to someone else for 12 years.  Glass moved in to her aunt’s inaccessible home, to keep her son with her, and fought to be able to return to her own, accessible home, where she could care for Gage with attendant care.

Despite their threats, social services never filed a court case, which meant that Glass had no way to seek review of social services’ actions.  Glass prepared to fight social services, and the media got involved.  In the face of negative publicity,  social services closed their file on Glass. Glass filed an ADA complaint with a state agency, and last week received a ruling in her favor, finding that the state of Montana’s Department of Public Health and Human Services (”DPHHS” discriminated on the basis of disability, and that the DPHHS retaliated against Glass for attempting to advocate for herself. The remedial phase of her case continues.

A pdf. version of the decision is posted on the disabilitypride.com site.

It was Christmas as usual (and unusual) at our house this year. My 17 year old had a cold as usual. I couldn’t find aides to work as usual. I burned part of Christmas dinner, as usual. It was unusual in that it was my 12 year old’s first Christmas at home (we went out of town last year for her first Christmas since joining the family). It was unusual in that we had a White Christmas with a record-setting almost 10 inches of snow. Typically Denver does not get that much snow, and it is very unusual to have White Christmas’s two years in a row. Kids here are more apt to be able to ride their new bikes on Christmas day, rather than use their new sleds.

My 17 year old got her usual gifts — a new slinky, a new set of handbells, and some electronic v-tech toy that lights up and vibrates. And, per usual, she had no interest in the gift wrapping or unwrapping. She has no joy in unwrapping gifts, and will explore them only after they are unwrapped and handed to her, provided she doesn’t have something better to do like sleep. I’ve finally stopped trying to create parity in numerosity and value between her gifts and the gifts her sisters get. She doesn’t care that I can buy her slinky off the dollar rack, or that her bells cost less than $15. They are the things she enjoys, and that is the point of gifts. Of course I do wrap up necessities like socks, toothbrushes, and new pajamas like I do for her sisters, but that is for our benefit, not hers. I always try to come up with a gift that is something she will enjoy, but that is new and different. This year it was a bead curtain. She enjoys it, but doesn’t get the gift part.

For years I have felt guilty over the inequality of her gifts, her lack of excitement, and even my attempts to force her involvement in the trappings of Christmas. I think I am over the guilt about the gifts, but I feel like I am walking a tightrope, balancing between letting her be herself, and accepting who she is, and pushing her to be more socially involved. I never know what the line is between letting her be herself, and allowing her to withdraw into her own world without interacting with the rest of us. Sometimes that line is bright. On Christmas morning, when she refused to wake up for gift unwrapping, it was clear she was choosing not to participate, and there was nothing I could do about it. I put her back to bed, and left her gifts under the tree until she woke in the afternoon. Sometimes she has to participate in something because the rest of us are — like Christmas Eve services at church. At other times, there are glimmers of enjoyment. She seems to enjoy me reading ‘Twas the Night Before Christmas, especially as my signing skills have improved, and I don’t have to skip parts because I have no idea how to sign things like reindeer. She definitely enjoys going to the Nutcracker.

The tightrope feeling remains about so many other things, at Christmas and year ’round. I am not sure where that line is of including her, forcing her involvement, and allowing her to have some measure of self determination that is appropriate for a young woman who is nearly a legal adult.

I have friends who watch the telethon, not in support, but to monitor the nefariousness. I do not, in fact, I block the channels that carry the telethon from the channel guide on our cable system so that the kids don’t accidentally stumble upon it. (It’s really not that big of deal, I also block ABC family for fear they will stumble on the 700 club, just like I block the naked people channels.)

What I can’t do is stop the fire department and their dammed boots.

We live in an area served by a small volunteer fire department. The fire station is a block and a half down the street. The fire department has responded to my house several times while I have lived here, mostly for small things, like my aide being trapped in my garage when the garage door springs broke. The only time it has been serious is when my daughter Adrianne went into a status seizure lasting 45 minutes (and they kept her oxygenated the whole time, no easy task).

We are fairly well known to the fire department. I want them to know us, partly so that they don’t devalue our lives if they respond in a life threatening emergency, and partly so that if I am incapacitated, the first call they make is not to social services. Two of my kids have sensory and/or anxiety issues when the fire trucks come past our house, so we’ve gone to visit to alleviate their concerns. We go to the open houses and barbecues at the station. They have keys to my house (so they don’t have to bust my door in during an emergency) and contact information for people who can take my kids in an emergency.

Because we go past the fire department almost every day, we see them with the dammed boots. They set up in the middle of our small arterial street, with sandwich boards encouraging donations and the boots. All traffic stops while people drop money into the boots. Every year I have to explain to my kids why we don’t give money, and every year I try to educate our fire department.

The boots are really an ingenious fund raising technique. I don’t object to that technique. I object to the telethon, and as long as the boots are associated with the telethon, I will object to the boots as well.

For 21 hours each Labor Day, the telethon is synonymous with pity. Millions of television viewers hear time and time again about how people with disabilities are doomed to live sad and tragic lives. They hear that without a cure, life is hopeless.

But we poor cripples have a knight in shining armor ready to save us. We have MDA coming to our rescue. A cure is near. Just give a little bit more money and these poor crippled people will be no more.

That is what I object to. Despite having a label of one of those MDA diseases, I certainly don’t live a sad and tragic life. Even though my disability is progressive, my life is far from hopeless. I know my kids, who have non-MDA labels, also don’t have sad and tragic lives, and their lives are far from hopeless.

(Well, okay, sometimes they think they do — you know I do work them like slaves, making them do things like folding laundry, and helping with dishes, raking leaves, and worst of all, cleaning their own rooms — sad, tragic and hopeless their lives may be, I know it’s definitely not their disabilities that creates the sad, tragic, and hopeless moments in their lives.)

While there are people with and without disabilities who choose to live sad and tragic lives, sad and tragic is not ubiquitous with disability.  However the telethon promotes the notion that it is, hence creating a problem for people with all types of disabilities. The telethon is not simply a problem for people with MDA disease labels, but for people with all disabilities. The pity in the telethon does not stop when someone changes the channel, but continues when traffic stops for the boot.

Neil Marcus once said:

Disability is not a ‘brave struggle’ or ‘courage in the face of adversity’… disability is an art. It’s an ingenious way to live.

That is the view of disability I try to instill in my kids. That is how I want them to view me, and how I want them to view themselves.  I’m proud to be a disabled person, and I believe my kids are too, or at least they are practicing to be proud. The telethon is completely antithetical to this social model of disability.  Just as I won’t let my kids stumble upon Pat Robertson’s hate mongering, I will not let my kids stumble upon the equally oppressive telethon.

The problem is that we can’t avoid the dammed boots.

I have worked hard in the last year to help my kids learn about money, and charity. We don’t give money to panhandlers, but we do engage in charity in a variety of ways. We donate clothes, toys and household goods to the Arc. The kids use part of their allowance to give to the monthly mission project at church. We give food to food pantries. We drop off food at a local TV station a couple of times a year when they have canned food drives. I am proud my kids are generous and want to help. They want to put money in the boot, and in their minds the boots are no different than dropping food off at the TV station, plus it is the fire department. They like the fire fighters. They help people.  My kids can’t imagine the fire fighters hurting people.

Last year I got away with having the two younger kids give the firefighters some literature about the problems with the telethon. They had no idea what they were doing. This year that won’t work. We’ve worked so hard at learning about money, and engaging in charity with their money, that they wanted to give money, not paper to the fire fighters.

I don’t want to quell their new found, and appropriate, feelings of charity, nor do I want them to be negative about the fire fighters, but I absolutely will not, can not let them give money. As much as I want my kids to understand the the problems with the telethon and relate them to the boots, they aren’t there yet. My kids are too concrete. In my kids mind, the fire fighters help people — period.

The result is that we are avoiding the fire department, and it pisses me off that the telethon is affecting our lives in this very concrete way. We are going out of our way to not drive past the fire department this year. We are skipping power chair driving practice, and bike riding practice because my kids will see the backed up traffic and flashing lights from the bike path where we practice, and want to investigate.  We are shopping at a different grocery store, taking the long way around to Costco and church, and buying gas at the more expensive station that is the opposite way up the street.

All that for those dammed boots.

With all great intentions, I created this blog to write about issues affecting parents with disabilities. The problem is that not everything I want to say is directly on-topic. I just get out of the habit of writing. I’m going to attempt to reform my ways and get this blog active again, and get as much in about parents with disabilities.

Part of writing about parents with disabilities is writing from my own perspective of being a parent with a disability. For nearly the last month I have been battling a severe eye infection and corneal ulcer that resulted in a cornea transplant last week. This has meant that I have been home, and directly involved in the afternoon homework battle with my middle daughter, Asiza, who is eleven. Because I can’t see her worksheets, I use attendants to help her with the worksheet part of her homework. However, each day she also has a spelling and reading assignment. I have, much to her chagrin, become more involved in these portions of her homework routine.

I try hard to use natural and logical consequences with my kids. Even though they all have developmental disabilities, I find natural and logical consequences to be effective most of the time. Their effectiveness is typically directly correlated to my ability to implement them, and I frequently fail and threaten all kinds of vile punishments that both the kids and I know will never be followed through on.

This afternoon I didn’t feel up to a word by word battle over writing sentences using her spelling words. I know when to pick my battle. I know the kid really doesn’t know how to construct a sentence. While I could walk her through it for all 12 of her words, I’m not convinced she is really learning sentence construction, and I know that I am not. Like I tell Asiza, “I already passed 4th grade.” (And for the record, I hated my teacher, and I hated school, and it’s really a period of my life I prefer not to repeat.) I really didn’t care that her sentences all begin “I like. . .” or that “I like stormy” and “I like twig” really don’t make sense. They were done. I was definitely picking my battles today.

I really didn’t want any battle, but I simply had to draw the line at the reading. For a long time it was a struggle to get Asiza to do anything more than open a couple of pages in 10 different books during reading time. For the last several weeks, I have been insisting that she actually pick books that she can read, and trying to work a bit on comprehension with her. After the daily battle to pick a book within her reading level, she quickly read aloud a few lines on each page, skipping 10 or 12 pages each time she turned a page. After about 5 minutes, she stops and claims she is done. Still in pick my battle mode, I said fine and told her to get another book. This was not expected, but she did get another book. Five minutes later, she exclaimed “done!” again.

I knew that she wanted to go outside where her sister was helping pick up trash in the yard, but I decided that was not one of her choices. I calmly explained that she had two choices: read for 30 minutes, or go to bed. She read a few lines on another page and again exclaimed “done.”

I again explained the choices, and told her that a failure to read would mean the default choice would be bed. Clearly she did not take this to heart. After several minutes of opening and closing the book, slamming it down, pounding it on the floor, and far too many warnings from yours truly, I told her that she made her choice: go to bed.

She jumped up, put her book away, and headed outside. I explained outside was not a choice and that she needed to go to her bed. I told her that I didn’t care what she did there, but she needed to be on her bed. My smart girl said, “I didn’t choose to go to bed.” I again explained how choices work, and by not reading, she choose to go to bed.

“You’re not fair.”

Oh yeah, I was more than fair when I watched her sulk, and I explained this.

“I didn’t choose this, and you said I had a choice,” she protested.

“See, you are smarter than you act,” I told her. She didn’t get that but asked if she could read then watch TV. No, but you can read, play a game, put together a puzzle, play with your dolls. . . It was a long hour before dinner while she was cloistered in her room.

She was allowed out to go eat dinner. She isn’t a super speedy eater, but she is relatively fast. The child who asks me to cut her noodles because they are too hard to cut, had managed to turn a plate of lasagna, salad and bread into a hour long meal. I was not picking that battle. However, when my aide came in to my room to tell me that she was trying to cut a 1″ square of lasagna into 10 bites, I again said “you are smarter than you act.”