about life as a disabled person or a caregiver or their families.
OK, let me start by saying I’m having one of those days when it seems like everyone is intentionally trying to screw with me. No, I don’t think its some type of conspiracy; but rather, it is a series of coincidental incompetencies. With that in mind, let me explain how this fits in with the title of this post.
I was once a healthy person living in a healthy family with no issues. So I was probably clueless then too, but I was never rude and I always tried to help a disabled person if I could (hold a door; make a path for them; etc.). I just never realized how hard everyday life was for them, because it didn’t directly affect my life. Shame on me then.
Why shame? Because we live in a community – whether its your neighborhood block, your village, your city, your state, your country, or the world, we are all an extended community. We should learn how to live with everyone – EVERYONE – and that includes people with disabilities or any other challenge. That doesn’t mean we have to go out of our way to be a caregiver for a stranger, but it DOES mean we should use common courtesy and sense to realize that some simple things we can do make a disabled person’s life immensely better. For example, if you see someone in a wheelchair struggling with a doorway, just go hold the door or help them. It takes a minute or two out of your day, but for that disabled person you have saved them many minutes of frustration and humiliation. Just imagine if you couldn’t open a door to, say, a doctor’s building and you were running late for your appointment and there were several people in the lobby watching you struggle. Wouldn’t feel too great, would it?
Now I’ll get to today. My wife Deanna qualifies for a discounted transportation service provided by Chicago’s Regional Transit Authority (RTA) / PACE. They provide wheelchair accessible vans and can take you to most places within Cook County or connect you to locations outside the county through other services. She had to fill out a bunch of forms and go to an interview (to prove she was disabled, if you can believe it) in order to qualify.
The way the service is SUPPOSED to work is as follows: you call the phone number the day before, give your ID number, and ask for a ride the next day; during the call you provide your starting point (and if its your home, they already have your address on file) and the address you are traveling to; and request a time for pickup. You can also request a return trip during the same call. They confirm your reservation and the driver has a 40 minute window (20 minutes before and 20 minutes after your pickup time) to arrive and pick you up. Yes, that’s right, I said 40 MINUTE WINDOW. A lot of time to wait.
Now let’s discuss how the service failed today (and also this past Sunday).
Sunday, June 19, 2011 (Father’s Day): Deanna and I were getting confirmed into the Catholic Church and we had our sponsors / guests / good friends in town from Minnesota attending. The pickup by PACE was fine, no problems, on time, and took us and our children to the church, while our friends traveled by their own car. After the service we went to lunch and scheduled our return trip pickup for 1:00 pm. We were ready in front of the church at 12:50 pm. We waited until about 1:23 pm. The PACE van never showed. I tried calling, but it was a Sunday and no one answered the phone. So we walked home – me guiding Deanna’s electric wheelchair about 12 city blocks in 80+ degree weather. Nice, huh? I called the service and they said the driver was there at 1:20 pm (at the end of the window). When I challenged that, the woman on the phone would not apologize; she simply said the vehicles all had GPS machines on them and she verified that the driver was there on time. I couldn’t prove otherwise, even though I had our guests there as witnesses.
Now, here’s the really good one. Today (6/23/11), Deanna had a very important doctor appointment at Rush University Medical Center at 1:30 pm. I scheduled our pickup for 12:30, figuring even if the driver arrived at 12:50, we’d still have enough time.
At 12:50 the PACE driver was nowhere in sight. Ironically, 3 other PACE wheelchair vehicles passed right by us. None of them ours. I called the PACE service and they said she’d be there in 5-7 minutes (not even acknowledging it was outside the allowed window).
She arrived at 1:01, 11 minutes later. Still no biggie, because if things went OK, we’d still be on time for the appointment. After parking at our pickup spot, she sat in the vehicle for a very long time reading (her manifest presumably). I said, “We need to get going as we have a very important doctor appointment to get to,” and only adding in my mind “and you’re already late getting here.” In a very snotty voice, she said, “Don’t worry, you’ll get there.” She didn’t apologize for being late. Then she got out of the van and she was an extremely large woman (I estimate at more than 450 pounds). Normally, I could care less what she looked like, except she moved very slowly and could barely get to the straps that lock the wheelchair into the vehicle. This again, took extra time and she kept having an attitude like we were in HER way.
Once Deanna (and our kids) were loaded on the vehicle, she couldn’t get the door closed properly. I made a sound like “Come on!” and she mumbled something under her breath, which I’m pretty sure was “shit heads”. Nice. This is how you treat disabled people.
Then we get started, but because she hit the gas peddle abruptly, it made Deanna slouch to one side in her wheelchair. I got up to fix Deanna’s position and the driver stopped the vehicle. I said, “Why are you stopping here?” She said in a very nasty tone, “If you unbuckle in the vehicle, I’m going to stop.” So I sat and rebuckled.
Next, she makes a wrong turn going the opposite direction of where we were headed. I said, “Whoa, where are you going?” “Sir, I’ll get you there.” “But you’re going the wrong way!” “I’m going to the highway.” (For those non-Chicagoans, she was headed for the Kennedy Expressway, one of the most crowded and traffic jammed roads in all of Chicago AND it isn’t even the most direct route to get the doctor’s building.) I tried to nicely suggest, “Can you take Ashland the whole way?” So she huffed and turned into a Costco parking lot. I have no idea why she did that, because now she was making matters even worse. I said, “Can you just pull onto Damen, turn right and go back to Ashland?” “SIR, I’LL GET YOU THERE.” (The caps don’t really do her response justice.)
Then, she started driving like a wild woman. Literally driving the next 5 blocks or so at about 60 mph on 30 mph crowded roads (Damen and Diversey). She swerved and this was frightening Deanna, my children, and me. So I said, “Can you please drive more carefully? You have children and a handicapped person on board.” So instead of driving fast and swerving, I think she intentionally hit every pothole and bump the rest of the way.
Finally, I started to take off the straps that she struggled to get to put on so as to speed up our exit from the vehicle. “Sir, don’t do that.” I, having had enough, said, “You’ve already made us late enough. I’m not going to let you make us later.” Finally we got off the bus – Deanna was shaken and dizzy; my two boys were visually upset and disturbed; and I, frankly, was pissed.
This is certainly not how the PACE service should operate and this is DEFINITELY NOT how you treat disabled people.
Thankfully the doctor appointment went very well with an extremely nice Doc. Our ride home was fairly uneventful, but by then I was already harboring some anger about how non-disabled people are clueless and don’t understand that they are making disabled people’s lives (and their caregivers and their families) much, much harder. It is unnecessary and rude.
We need to open our eyes and hearts, people, and recognize that, by no fault of their own, disabled people could use a little help and a LOT of awareness. Please spread the word.
Thank you for reading my rant (oh, and I WILL report her to the PACE service).
TJ
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