MIA’S SPACE: A World That Works for Everyone
Mia rides paratransit to work three days a week. The fare is $3.20 each way, in cash, exact change. She can buy a book of 10 tickets for $32. She must give the driver the money and get the tickets at the same time, so this involves some arrangements. Mia lets me know when she has two tickets left. I tell Fabersha, who supports her two days a week, to go to the bank with Mia and get the money for the tickets. They put one $20, one $10 and two $1 bills in an envelope. I email the transit system and let them know what day Mia will be bringing her money for tickets and they send the tickets out with the driver. The exchange is made, and she has another week and a half of transit. Mia is very organized, so once we got this system down, it worked like clockwork.
So imagine my reaction when transit called her to say the fare was going up 30¢ a ride, effective immediately. She couldn't pay it all at once, she had to pay it ride by ride. This gave me serious pause. I thought, "Do they have any idea how hard it's going to be for me to explain to Mia to find an extra quarter and nickel for each ticket in her book?"
Here's what happened. I called her and tried to explain it to her. She was frustrated and so was I. But a couple minutes later, I received this text message:
I call her back and say, "You have dimes, you need two quarters and two nickels." A minute later, I get this: 
Ok, not quite, so I call her back, and say again, "No, you need TWO nickels and TWO quarters."
At this point, my hall mates are engaged in this conversation. It took two attorneys and a PhD to figure out maybe we should send HER the picture of what she needs. I lay it out and send Mia this. "This is what you need. Two quarters and two nickels." At which point Mia calls back all frustrated and says "Mom, I can't do it!" So I ask her, "What do you have on you?" She says, and I can picture her slapping her right and left pockets, "I have a quarter and two nickels here, and a quarter and two dimes here," and I tell her, "Just get on the bus and show the driver what you have. It's enough."
This is not a criticism of the individuals who run the paratransit system. They are always responsive, working out schedules for getting people with disabilities to work and appointments with a limited budget, staff and only a few vehicles. But this transaction sparked a lot of conversation in the office. Few people appreciate the granularity of life's daily tasks for someone with a cognitive disability. For those of us working on policy, these incidents keep us real. The transit system would be so much easier with smart cards that could be loaded online, and regular slots for people with regular schedules like Mia. But tax-averse politicians prevent an increase in the budget. Instead of supporting work, we are making it harder.
I was reminded of the opening lines of Beth Mount's TED Talk. "Imagine a world that works for everyone. It's time."
by Pat Nobbie, PhD, Mia's mom
Tags: Making a Difference, Mia's Space