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Accessible Parking, Part 1: A Primer

"Annie, come on!" My niece tugged on my hand. We were headed to the car from preschool pickup but I had stopped and was staring at a long row of handicap accessible parking, halfway full of minivans with no permits. Able-bodied adults loaded and unloaded their able-bodied little ones. A knot formed in my throat and then twisted as confusion gave way to the realization that these precious spots were being used for convenience.

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But then I remembered: before accessible parking became so important to my family, I didn't know much about it. I used to feel a twinge of annoyance to see open spots up front while I had to walk (on my strong, healthy legs) from the outer reaches of a crowded lot. It's human nature to look at things from our own point of view, so maybe it makes sense that many people don't understand accessible parking. If that's the case for you or someone you know, here's what I hope is a helpful introduction.

Accessible parking (usually called "handicapped" parking, but we're using the word "accessible" here because it's more respectful and accurate) is reserved for individuals who have any kind of physical disability that warrants getting a legal accessible parking permit in the form of a placard or license plate. Both the permit and the parking spots are marked with the familiar blue backdrop behind a drawing of a person using a wheelchair. This area of parking is located closest to the entrance because the people using it need to park closer.

SIDE NOTE: A physical disability can include anything from using a wheelchair to having a metabolic disorder that can't be "seen" but that severely limits energy levels. It is up to an individual and her doctor to determine whether accessible parking is necessary and it's not for the rest of us to judge. Yes, some people borrow their grandmother's placard so they can park close illegally, but that's rare and there's no way to know anyway. Just assume that if someone has an accessible parking permit, a lot of time, effort, and likely heartache have gone into getting it. 

Because accessible parking spots are reserved for individuals with official permits, no one else can park there. Ever. Even if the business is closed. Even if there are ten open accessible spots. Even if you'll just be a minute. Even if you have to shepherd 17 kids inside. Why?

Mainly because it's illegal. Would you park by a hydrant because there is no fire truck needing access to it right now? Of course not. You know there's a reason that space needs to be left open. And you know that if you park there, you're parking illegally and may get a ticket.

Beyond legality, it's disrespectful to park in an accessible spot you don't need because it assumes that it's not needed by someone else. But you can't know who might be on the way right now. A field trip for kids with disabilities. An outing of elderly people. A support group for people recovering from serious injuries. You just don't know.

Parking in an accessible spot without a permit sends the message that those spots are not a big deal. But they are. They are a very big deal. For some people, accessible parking is a gateway to accessing their community. It makes it possible to go to the store themselves, to visit their grandchild's classroom, to do something that is normal and easy to many others. 

We are all prone to believe that things we don't see as a big deal aren't a big deal at all. But to many living life with disability, accessible parking is a sign and symbol of welcome. It says there is a place for you here. By reserving a few parking spots, we extend that same welcome. We make space in the world and in our own lives for the needs of others.

Preventing Suffering

One question I've gotten surprisingly often over the years is: "Did you know about Collin's disorder before he was born?" Most of the time, the person wants to know, Did you have a chance to prepare yourself? But sometimes I can tell they're actually asking, Did you have a chance to avoid this?

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Three weeks ago, CBS News released a story about Iceland's extraordinarily low rates of babies born with Down syndrome, owing to a combination of prenatal screening and "heavy-handed genetic counseling." Approximately 85% of pregnant women in Iceland elect to have the screening and approximately 100% of the women who receive a positive test for Down syndrome choose to terminate their pregnancies.

This is not a post about abortion, so let's all take a deep breath. It's not even a post about the fact that in order for Down syndrome to disappear, people with Down syndrome have to disappear.

This is a post about suffering.

In the CBS piece, the reporter interviewed Helga Sol Olafsdottir at the hospital where over 70% of births occur in Iceland. She counsels women who receive news of a chromosomal abnormality on whether to "continue or end their pregnancies".

Olafsdottir tells them: "This is your life -- you have the right to choose how your life will look like." Her explanation of what happens when the woman chooses to terminate her pregnancy?  "We ended a possible life that may have had a huge complication... preventing suffering for the child and for the family."

We're preventing suffering. If only.

Of all of the troubling aspects of this story, the one that struck me most deeply was the idea that one grossly oversimplified piece of information -- a chromosomal 'abnormality' -- can be a key to avoiding suffering. The idea that avoiding suffering is the goal as a parent. The idea that, regardless of whether you have the right to "choose how your life will look," you have the ability to make your life look a certain way.

The suggestion that a child with 'normal' genetic makeup won't bring you suffering is an illusion at best. Make no mistake: when you choose to have a child, you choose suffering. You can't know what shape that suffering will take and there is plenty of pastel hullaballoo to distract you from the fact in the early days; but it will come.

Maybe there will be terrifying food allergies. Maybe there will be uncontrollable behavior issues. Your child's "huge complication" might be cancer or terrible life choices. 

So why the desperation to avoid this particular "complication", this brand of suffering? Because, as Olafsdottir's statement implies, in our society there is no suffering as undesirable as disability. We can easily speculate on reasons for this: disproportionately low representation of individuals with disability in the media, segregation in schools, lack of education and experience. It all adds up to make disability a frightening unknown, both practically and socially. 

But here's the truth: there's only one thing more certain than suffering in child rearing, and that is joy. You may not know what suffering is coming, but you can count on joy. Always. And, rather than canceling joy out, in some mysterious way suffering actually seems to strengthen it.

This discussion, of course, doesn't touch on the suffering that can supposedly be prevented for the child or the suggestion that it is better to be dead than to live with disability. If you're interested in some thoughts on the subject from the kids' point of view, Collin and his cousins shared this.

The ultrasound above is the first glance I got of Collin's face. Looking at it, I had no idea the suffering that lay ahead of me. I also didn't have the slightest inkling of the joy in store. None of us do in the beginning. We can't. But we can go into parenthood with our eyes open, knowing that our very life is getting ready to become a "huge complication" and bracing ourselves for the joy will inevitably surprise and overwhelm us again and again.

Three Wishes

I've started to make some plans for homeschool this year and even to get excited about the possibilities. I know Collin is going to be just fine and learn a lot. But today is still a hard day. It's the first day of school for our district, so the disappointing outcome of our two years of hard work is feeling more concrete.

I try not to waste much time wishing things were different. Not only is it pointless, but it also typically doesn't mesh with the fact that I fully accept Collin just as he is. But today it feels okay to be wishful. And I can't help but wish today was Collin's first day of school. I wish I was dressing him in his uniform and packing up his backpack and feeling nervous about how the other kids would react to him. 

I wish public school was for everyone, not just those who fit easily into the system. That the system was geared more toward students than policies. Why can't the process of finding a place in that system be more of a partnership and less of a standoff? In which the approach is Let's come together to make school work for this kid instead of Here's what we're required to do, do you want it or not? Who loses out when we listen to the needs of the kid, even when -- or maybe especially when -- his parents have to speak for him?

Ultimately, I wish there weren't so many battles -- not just in the world of education, but in the world at large. So much of Collin's everyday life seems to require making a way: the countless public places that aren't wheelchair accessible, the medical equipment that languishes in an endless paperwork trail for months, the insurance companies that deny medications or supplies they've been covering for years. "It's always something," parents of kids with disabilities say to each other, and it's not just a saying. But it becomes your normal, so you stop noticing quite as much until a bigger roadblock comes along and then you find yourself asking: Why does it have to be a fight for my kid to get from here to there? To get what he needs? To go to school?

Wishing is pointless in that it changes nothing about the situation. But being open about what's hard and unfair benefits everyone. It lets you in on our reality, and it helps me move forward. So now I'm going to look at some first day of school pictures on Facebook and then take this kid to the arcade.

School

Two years ago, after a wonderful experience with a private pre-K program, we started the process of trying to find a place for Collin in the public school system. 

From the beginning, we determined that the most important thing for ensuring an effective educational experience was an instructional assistant who knew Collin well enough to read his cues and respond appropriately. We made this clear from the start and again at every step in the long, long road. We met with resistance at first, but chose to wait it out with as much patience and kindness as we could muster while still sticking to our guns.

So when, 18 months into the process, an instructional assistant was approved to work with Collin at school, we were thrilled. The job opening was posted and someone who knows Collin very well, who has worked with him in both home and educational settings for years, applied for the job and got called in for an interview.

Did this person get hired? No, she did not. Someone "better qualified" was chosen.

Could anyone in any position of authority explain to me how the chosen candidate was better qualified for the position? No, they could not. The only information I got was that the other candidate has more experience in the school system.

And at any point in the process did someone contact us to say, "We know that you feel very strongly about this, but we think another option might be better"? No, they did not. The school chose someone with no knowledge of Collin and didn't even tell us about it. I found out through another avenue.

We were being asked to trust a panel of people whom we didn't know and who didn't know Collin in their decision to choose a person with no experience with Collin to be his primary caregiver and facilitator at school. And our first opportunity to meet the assistant would be two days before school starts. No one we spoke with could/would answer any of our questions about the process, the decision, or the candidate and dismissed every concern with an "I understand your frustration."

So, after two years of meetings and phone calls and paperwork and hoping and hoping and hoping, we withdrew Collin from school.

Parents in our situation, who have children with a wide range of disabilities and no verbal communication, approach school in all different ways and I deeply respect those decisions. This was just the approach we chose and I still believe it was and is the best for us.

So, today I am returning Collin's school uniforms to the store. My heart wrenches thinking of his cousins and friends starting school without him and I'm avoiding back-to-school advertisements. After a few more days of being sad, I will regroup and start to think about what's next -- how to continue to give Collin what he needs in a way that's best for him.

Meeting Annie

We sat about halfway back from the stage in the weird half-gym where my niece would be performing as Mother Goose in the kindergarten musical. It was hot and loud. Collin was on the end of our row of folding chairs, because that's life with a wheelchair.

She came through the door bundled up in a coat, like maybe she had chosen to skip part of her recess to see this play. She had the confidence of a "big kid". Probably at least third grade. So it must have been a younger sibling she was there to see. She spotted her parents and moved toward them. Until she saw Collin.

She stopped in her tracks when she laid eyes on him. I heard her audibly gasp. Her face lit up with a delight that I didn't understand, but recognized immediately. I smiled back at her, mostly because I couldn't help it, and she took a seat close by as the play started.

I look at Collin a lot during events. I enjoy it more when I see his reaction. And every time I looked over, she was watching him too.

Before the applause had completely faded, she climbed between the seats in front of us and was in our row. She was touching Collin before the words were all the way out of her mouth: "Hi, what's your name?" When he didn't answer, she looked up at me, not willing to wait. "What's his name?"

She rubbed his head, just like he likes. She complimented his shoes. She squeezed his hand. She laughed at his happy kicks.

"What's your name?" I asked. She looked straight at me. "Annie," she said. "My dream is to start a school for kids like Collin."