Making Life Accessible for All

 (I've written about the Americans with Disabilities Act here and here. ) 

I'm a big fan of the Americans with Disabilities Act. But I also don't think it goes far enough. And when people say, oh, we don't need it, it's unnecessary government intervention, I want to use this post as an example of how it doesn't go nearly far enough. 

I've never used a wheelchair on a daily basis. I've spent time in them in hospitals, but I've never had to move one myself. * My disabilities are invisible, for the most part. But I've become sensitive to how the ADA's application meets only the letter of the law, and not the spirit, and it was never more pronounced to me than this weekend, while I was out enjoying a day with my friends. 

Most people think that people in wheelchairs get pushed around by someone else. That's not entirely true. With car adaptations, different types of wheelchairs, and other innovations, people who rely on a wheelchair for mobility can get around by themselves--if the world decides to help them out. 

This weekend, I went to several places: a Mexican restaurant, a grocery store, a bookstore, and a movie theater. Only one of these places would've allowed someone who was in a wheelchair, or used a walker or crutches, easy access to the building. 

The Mexican restaurant had no handicapped button for the entrance, and there are two doors. The first one opens to a vestibule that has stools in it, and usually people waiting, and it's sort of narrow. You then have to open another set of doors to get into the restaurant, proper. And then you can get a seat, because they have wheelchair accessible tables. But if you're a person trying to get around without help, you're sort of stuck. 

The grocery store had sliding doors. Win. 

The bookstore is a local Barnes and Noble, and this is where I really noticed the problem. Barnes and Nobles have two sets of doors, in all their buildings, so they can sell discount books in the entryway. But the doors aren't power doors. So the person would have to pull open the door with one hand, somehow keep it propped open enough to wheel through, then open the second door, wheel through, all without, you know, hitting themselves, and assuming this can even be done. I'm guessing it can be, but it's probably difficult. 

The trip to the bookstore actually illustrated the problem I"m writing about here. There was a woman pushing another woman in a wheelchair. The woman pushing would've had to step in front of the chair, open the door, prop it open while someone else pushed the woman and her chair through, then prop open the next door and do the same thing. Instead, I held open the first door, and someone else held open the second. 

But think about this. This is madness. Why have a curb cut in the sidewalk leading up to the store, why have handicapped parking spaces, if there's no easy way for a handicapped person to enter without help? 

And then I decided to start taking photos. 

The next stop was the movie theater. This is where it got ridiculous. 

This is the handicapped entrance, tucked off to the side. So at least there is one. 

But then this is the way into the theater from that entrance: 

Do you see a problem here? 

When I started to think about it, it just got insane. We have curb cuts, but we don't have doors that allow easy access for wheelchair/walker/crutches users. What madness is this?! 

We need to start expanding the idea of disability. People who are disabled are also independent--or would like to be. But on my Saturday wanderings, my day would've been a lot harder if I'd been mobility-impaired. Now, I guess, if I was in a wheelchair, I'd be used to it, but that doesn't mean I'd like it. 

And of course there's all the other things. Stores having counters that are level so someone in a wheelchair can see over. Having accessible tables at restaurants (although I've seen this on the rise). The list goes on. 

The next time you're out, look around. How easy would life be if suddenly you couldn't walk? If you broke your leg or something? I'm betting your life would get a lot harder. And it doesn't have to be that way. 

We don't need these double entry doors. Put power doors on your entrances, if you're going to do that. Make it easy to find handicapped accessible entrances, and then don't block them! 

There is so much more work that needs to be done to give access to all people. So, yes, we need the ADA. We need it to be stronger, if anything--not done away with. 

*I have moved the chair, briefly, in hospitals. But not for long--they usually don't let you do that. 

Making the Country Accessible: Churches, Catholic Schools, and the ADA

Yesterday, I wrote about the ADA as it celebrates 25 years, and what it's meant to me, personally, as well as what still needs to be fixed. 

Today, I'm going to write about a specific segment of life and the ADA: churches. Specifically, Catholic churches and schools. 

The ADA mandated that buildings erected after the law went into effect had to be what we call "handicapped accessible," meaning people who use wheelchairs or crutches or what have you could access them. But, like this piece in the Cleveland Plain Dealer says, it didn't say how that had to happen. And sometimes it could be a little ridiculous. 

At my school, for example, there were ramped entrances--but you couldn't access the second floor of the building, where the 3-8 grade classrooms were. The bathrooms weren't handicapped accessible. One of the girls' restrooms on the first floor required going down a short flight of stairs to get to it.  This is the sort of thing that made one ponder common sense--didn't the builders of the school ever think someone might be injured and need an elevator to get to class? Or, at the very least, make the first floor of a building all one level? What sense does it make to have to go down three stairs to get to the bathroom? 

(This strange phenomenon I've also seen in older public schools. What was this about, architects?) 

In the many churches I've been in, only a few have had dedicated spaces for wheelchairs in the sanctuary, and no, open space at the back of the church doesn't count.  I've seen one handicapped accessible confessional in my entire life. 

Some church restrooms might have grab bars, but how would a person get into the bathroom? There's no button to push, and the maneuverability required to get in is truly amazing. I was a member at a parish where to get to the bathroom, one had to open a door, which led to a very small hallway, then open another door to get to the bathroom. How is a disabled person supposed to do all this that in a space that's probably not wide enough for a stroller? 

Doors that separate the vestibule from the sanctuary--are they handicapped accessible? Most likely not. Sure, they might be propped open, but what if they're not?  (My church, not to brag, is really good about this. We have handicapped accessible switch plates on the outside doors and inside doors.) 

We've all seen churches that hide their handicapped entrances so well that it's like a scavenger hunt for someone to get in. Couldn't we make God's house a tiny bit easier to access? We've already talked about handicapped parking spaces, and these are especially important in a place like church. 

I've never been to a church that provides homily notes, and I'd like those a lot. Some churches have telecoil systems installed that can help people with hearing aids, or even CIs like mine, if you have the right equipment or programs on your processor. But homily notes on websites would be nice, as would appropriate speaker systems, so everyone can hear. Use the microphones, guys! Also, bulletins in braille? I've never seen that. Does that even exist? Or hymnals or missals in braille? Never seen those, either. (Assuming there's a demand for it....I mean, I'm guessing there are a few blind Christians? :) )

The worst, though--and I hate to say this--are Catholic schools. Very few of the ones I know provide appropriate help/accommodations for physical or intellectual disabilities. The thought is that if you need those services, you have to go to your public school.  What does that mean for parents who want their children to have a Catholic education?  Homeschooling, I suppose. 

Here are two excerpts from a local, independent Catholic school's handbook (Independent meaning they aren't part of the diocesan school district): 

“ [Name of school] does not have the resources to provide evaluation and intervention services. Referrals will be made to the student’s district of residence.
[Name of school] does not have the facilities for students with serious disabilities.
”

So, if you have a child that might be in a wheelchair, or needs additional services--sorry, you can't send your kid here. (And also, who defines "Serious disabilities"? Ten bucks says it's not a medical professional... ) 

(In a quick look around of my diocese's school district website, I couldn't find anything on accommodations for disabled students. My elementary school did provide intervention services, and I know they've beefed this up since I graduated. So this is an area where strides are being made.) 

This isn't something that's just limited to elementary schools. No one will make the argument that there's an overflow of orthodox Catholic colleges. So the fact that one of them, Wyoming Catholic College, can make being physically in shape--and in good shape--part of their admissions program is reprehensible to me. 

The following is from their website: 

“I am disabled and cannot participate in the Outdoor Leadership Program (OLP). Can I still attend WCC?
A
Unfortunately, the College cannot accept students unable to meet the physical demands of the OLP, which is an integral part of the College’s academic program. An applicant who is denied medical clearance cannot be accepted into WCC.”

— http://www.wyomingcatholiccollege.com/about-wcc/faq/index.aspx

This makes me angry. Really angry, actually. WCC has a reputation of being a top-notch, orthodox Catholic college--and I wouldn't have been able to attend. Nor could anyone else who has, say, cerebral palsy, or is blind, or has any other number of physical disabilities. We can't attend because the school has a program that is unaccessible to anyone who wasn't blessed with good health and physical ability. 

I realize that they are a private school, and have the right to impose standards for admission, just like all colleges do.  But the fact that a Catholic School--which serves a God who accepted everyone, no matter their physical ability--has standards like this, is maddening. Truly, deeply maddening. Maybe if there was an abundance of excellent Catholic colleges, this wouldn't be so bad. But there isn't. And this isn't just a standard like a GPA, or an ACT/SAT/AP test grade for a scholarship. This is a line about basic physical ability. 

Public schools can't have standards like this, because they receive federal money, and thus they're prohibited from doing it by the ADA. But when did Catholic schools become places for only the super- intelligent and able-bodied? I realize that funding is an issue. I'm not naive. But shouldn't the message be that however God created you, there is a place in our school--which has Christ as its reason for existence? 

Making the Country Accessible: Thoughts on the Americans With Disability Act

President George H.W. Bush signs the Americans with Disabilities Act in 1990. 

Although I don't generally call myself this, I'm a disabled American. (And no, I don't use a wheelchair.) The Americans with Disabilities Act (ADA) made my life a lot easier before transplant--but post-transplant, I see a lot of places where it needs some work.  The Act is 25 years old, so it's a good time to think about this. 

I'm inspired to write about this because most people, when they think about the ADA, think about people who are mobility-impaired--mostly, people in wheelchairs, or who use crutches or canes, or people who are blind. But let's think about people who are Deaf or hard-of-hearing, and people who have respiratory or heart problems. Let's broaden our scope. 

Pre-transplant, I used a handicapped placard for my car. I came upon it rightfully, because the amount of distances I could walk, especially after my stint in the ICU my sophomore year of college, was very limited. Walking around my college campus could be difficult, especially with my backpack full of books. But if you looked at me, I didn't "look" handicapped. I looked fine. I also had about 20-25% lung function. 

Lesson 1: Don't judge someone's handicapped status by the way they look. 

I was very grateful for elevators in my lecture halls, and in other places. There was no way I was going to be climbing lots of stairs (just ask my friend Chris, who had to carry me up the last few flights of the Empire State Building when we visited NYC during Christmas break our senior year. Yeah. Let's all be glad I only weighed about 95 pounds at that time.). My high school also had an elevator--which I never used, but it was good that it was there for students who broke legs or ankles. My elementary school wasn't accessible at all, and students who couldn't go up and down stairs had to be carried by their parents to their classrooms. Not great. 

Even post-transplant, I still used my placard. When I went back to work four months post-transplant, I was still working only half days. I still looked sort of sick--my skin was very pale, I was extremely thin, and my hair hadn't developed the healthy sheen it has now. If you cared to look at me closely, you'd have noticed that I was either sick with something, or recovering from something. Since I worked at the Statehouse, we had Highway Patrol officers that provided security for us, including patrolling the garage. I never paid them much attention to them until one stopped me as I went to my car, shortly after I had returned to work.

"Is this your car?" 

"Yes."

"Why is it parked in a handicapped spot? Are you handicapped?" The tone in the officer's voice indicated that he didn't think I was.

"I just had a double lung transplant."

There are few things more satisfying than watching people realize they've just had a major Foot in Mouth Moment. 

Now, I don't have one anymore. Now I walk across the parking lot with all the rest of you. But let's please remember that there are many invisible disabilities. Arthritis? Check. CF? Check. Autoimmune disease in general? Check. Epilepsy? Check. Diabetes? Check. Etc. 

(also, little side note: CF can cause arthritis. Yeah. That's a fun little holiday treat, as they say in Family Man. One of my friends has terrible CF related arthritis. Mine was not as bad as hers, and there were still days when my joints were so tender and so painful that the thought of putting any pressure on them--the though of even standing--was out of the question.) 

Let's talk about my life now. 

I have a cochlear implant.[ It is only by sheer dumb luck, or God prompting, that I took two years of American Sign Language in high school. I can use it if I have to. Normally, I don't. But I can.] There are so few accommodations for Deaf and hard-of-hearing people! 

Marcus Theatres is the only cinema chain around here--and I live in one of the largest cities in the U.S.--that provides captioning for every movie it shows. AMC doesn't (AMC is our other big local chain). When I want to see a movie, it has to be at the local theater, and if it's not showing there, I can't go, because I won't understand it. Apparently, AMC doesn't think that Deaf people or people like me might like movies. 

The system I use at Marcus is called Captiview. Marcus has about five of these systems and all I have to do is ask for one at the box office. It's easy to use and it's not distracting to others. They can't see the light from the captions (My friends and family have tried to read the captions when we're at the movies, and it's only if I turn it to face them that they can). Sure, it's a bit unwieldily to carry around in the multiplex, but it works. I love movies, and now I can go out and watch them in the cinema like everyone else. I get to see movies, movie theaters get my money! Yay! But if all movie theaters provided captioning, I could see a broader range of movies--and I'm lucky that the theater that is closest to me provides this service. And they're not a nationwide chain. They're Midwest-based and only in states like Ohio, Wisconsin, Illinois, and Indiana. So if you live somewhere else, then I hope your local theater has something similar, or you're out of luck. 

Some cable channels aren't captioned. YouTube videos, or online videos? No captions except "automatic" ones, which are about as useful as captions in Swahili to me. Warner Brothers, especially, incurs my wrath, because they do (Pardon my French, here) half-assed captioning. When I watch The Wizard of Oz and the captioning automatically comes on, it doesn't translate word-for-word. It gives a summary of what the character is saying. 

Lesson 2: Deaf and Hard of Hearing People Like TV and Movies. Please caption things for us--COMPLETELY! 

Seriously--the next time you watch anything from Warner Brothers, turn on the captioning, and you'll see what I mean. I know they're leaving words out, because I can hear the dialogue. (Not understand all the dialogue. There's a difference.) 

Some DVDs don't even have functioning captions. What is that about, guys?

Captioning like this isn't covered by the ADA. The only thing that must be captioned are channels that receive federal funding. Well, thanks. 

Normally, I'm a small government person. But this is ridiculous. Provide a basic service that is inexpensive (see the Captiview site I linked to--that's one of the selling points for their technology), easy to use, and not at all inconvenient to other patrons. 

Another area that needs work? The phone. People, not everyone who is Deaf or hard of hearing has a TTY. I don't have one. I don't know how to work one. But if a website provides chat services, I'm fine. We can communicate just great. I use email most of the time because if you call and talk to me, you will sound like Charlie Brown's teacher, unless I know your voice really well. (Meaning, you're my parent. And even then....)

AAA, for example: when I got a flat tire a few years back, I couldn't call them. I had to text my Dad to have HIM call them to come help me. It was ridiculous. Can't we come up with an app that will allow texting to contact services? This is the 21st century. We have apps for everything. Or not even an app--a number that could be reached via text message. 

This is especially true in health care. Oh my gosh. When I have a call with a case manager, my mom or dad has to sit and translate for me, because the case manager can't email me. It HAS TO BE over the phone. What? What sort of sense does that make? If you don't want to email, then set up a chat window on a website, like my bank has, or like many shopping sites have. If Bobbi Brown Cosmetics and the Disney Store can have a chat interface, then medical and insurance companies can, too.  Don't they ever think they might be working with a person who has a hearing disability? 

The law did a lot of good things, but there are plenty of things that still need work, especially in the realm of hearing, as I hope I've shown you. 

Tomorrow I'm going to write about accommodation in a place where you'd think it should be second nature--churches.