Monday, March 30, 2015

The ADA and You. Yes, You.

It seems like more and more often these days I'm seeing articles about organizations pushing back against following ADA requirements. On a day-to-day level this isn't new. Anyone who has had a prolonged relationship with any disability community sees it constantly. For me it's usually doctor's offices telling Deaf people that the office isn't responsible for providing interpreters. (This is wrong by the way). Seriously, doctor's offices are the worst for this, and yet you can kind of understand how they wouldn't know. After all, they are usually small offices that specialize in being doctors, not in legal matters. While I'm sure they all have a lawyer they work with for the things you need to be a practicing doctor, they don't have anything that would approach being a legal department, and they probably contract out the business end. Basically, even though they're wrong and need to know that they are wrong, you hope that they'll listen to reason. (They often don't). What I can't abide are huge huge institutions that don't seem to understand their responsibilities under the ADA. Seriously, it's disgusting.

Part of why this irks me is that it touches on the two courses I teach regularly, Business and Government Interpreting, and Medical Interpreting. I teach a units on HIPAA and on the ADA. So here's what I'm going to do, even though I do ADA consulting as a business, I'm going to give away some of the milk for free. I am going to give the quick and dirty on your responsibilities vis-a-vis the ADA. I will try to be brief, I will try to not be sarcastic. I will add the disclaimer that I am not a lawyer and that this blog entry should not be construed as legal advice. (I don't know why we always have to say that, but there, it's said, don't sue me.) I'm going to try to do this in plain language.

Quick Primer

The ADA has five titles.

Title I: Employment

This commonly misunderstood title requires accommodations in places of employment. This means that you must accommodate your employees and cannot discriminate against disabled people in hiring. The part of this title that is misunderstood is that it applies only to employers with 15 or more employees. This is done to protect small businesses. The problem is that many businesses totally misunderstand this and thing that if they have less than 15 employees they don't have to accommodate customers. These people are wrong. (As we'll see later). Remember, Title I only applies to your employees, not your customers.

Title II: Non Discrimination in State and Local Government Services

The Feds are already unable to discriminate so this law was set up so everyone below the Feds have to play nice. It's a shame we even need this kind of law. Basically, if you're a government you can't refuse service to people based on disability.

This is what makes stories like this one, in which a Deaf man was held in an Arlington, VA jail for six weeks without and interpreter so inexcusable, because by law it's totally avoidable. And I'm no policing expert, but we do kind of tend to rely on the police and the corrections system to, at minimum, know the law. However, this quote from the sheriff's department lawyers shows that they're either complete jerks, or totally ignorant of the ADA:

"even if the discrimination were intentional, the lawyers write that it would not violate federal law because there is a rational basis for the discrimination: "it takes extra resources and creates additional security considerations to bring in an ASL interpreter,''

That's right, these lawyers think that federal law allows for discrimination on the rational basis that it's expensive, and requires more work. But hey, what's six weeks of totally unnecessary incarceration when there's a couple hundred bucks to be saved? The weirdest part of this story is that it happened in an area with the highest concentration of Deaf people in the country. So you'd think they'd know better. It's inexcusable and the tax payers of Arlington are about to be at least several hundreds of thousands of dollars lighter.

In another instance I had a state university fight me on paying for interpreters for clubs and organizations. They're stance was it was it was expensive and that if they had to pay for interpreters for all clubs they'd be ruined. They also claimed that their use of federal funds didn't necessitate that they follow the ADA. They were wrong on both counts.

Title III: Nondiscrimination on the basis of disability by Public Accommodations and in Commercial Facilities

Here's where all those businesses with less than 15 employees need to pay attention. Regardless of how many employees you have, if you serve the public, you have to provide accommodations. "Oh ho!" you say, "But interpreting is expensive. I can claim this 'undue hardship' loophole thing and then I won't have to pay." Yeah, you're out on that "cool life hack."

The cost of service is in no way contingent on or related to the price the customer is paying. So let's say you charge $100 for a patient visit, but an interpreter costs $130. Too bad. Seems unfair? Sorry, that's the cost of doing business. But if you think of it the way the government does it hurts less. You see,the undue hardship test is based on your total annual operating budget. So, assuming you turn a profit of more that $130, you have to pay for the interpreter. It might also interest you to know that the last time I checked (2014) no organization had ever won an undue hardship case. Ever. Never, ever. Ever. If you think you're going to claim undue hardship to avoid accommodating a client, be ready to pay way more in a law suit than you were going to pay for an interpreter.

"Ah, but I'm a non-profit. Obviously I don't have to provide accommodations, I have none of these profits you speak of." Sorry. The ADA doesn't distinguish between for profit and non-profit, again, the standard is annual operating budget. You would be shocked (shocked!) to know some of the enormous, well known, national non-profits that have contacted me for volunteer interpreting. These are organizations that are paying huge staffs of lawyers and marketers and web designers, and writers,have huge paid boards and management structures and so on. But when they have to pay for accommodations, all of a sudden they're poor.

Sorry non-profits, if you have any employees or pay for any services, you should be paying for accommodations. Do you call around for free plumbers, or free electricity? Do you ask for student volunteer accountants? Do you petition for free Internet service? No? Then why do you think you should get your accommodations for free?

That said, if you're a non-profit there are ways to get low cost or free interpreting services, please contact me for a consultation. I'm kidding. If you have people who are already a part of your organization who are qualified to provide accommodations, ask them. But make sure they're qualified. Seriously. Not just someone who knows some signs. Or ask for donated services, for which you will provide a donation receipt. That way everyone understands that services aren't free, and that in the event that no volunteer is available, you know how much you can expect to pay for service.

I recently saw this story about a Deaf family suing a peewee football league for failing to comply with the ADA. I encountered this in a local league as well. A Deaf kid made an All Star team and the league had no plan as to how to provide an interpreter at the All Star show case tournament. If you are a non-profit you must come up with an accommodation plan right now. Right now. You have to put it in your budget. You have to add it to your fundraising. Seriously, if you have Deaf people in your realm at all you have to have a accommodation slush fund. If you don't you're setting yourself up for trouble.

Oh, and for you medical providers, that means you have to provide services for immediate family members of the patient (parents, spouse, children). 

Title IV: Telecommunications

Title V: Misc.

These probably don't apply to you, but you can look them up.


I can't stress this enough, you can't get around this stuff. You think you can, but you can't. I once worked for a company whose lawyers told them they could do all kinds of things they were sure were totally OK according to loopholes in federal law. They did this even though many of us employees warned them they were breaking the law. They ignored us, the Feds hit them with a $20M penalty and the company almost went under. Seriously, don't mess around here, just go ahead and do what you're supposed to do. Plan ahead. Understand that like taxes and insurance, ADA compliance is part of your overhead. It's not extra, it's not a surprise, it's a standard. Get used to it.

Really, I shouldn't have had to write this. There's a million guides out there for you. The problem is, you're ignoring them. So now there's one more. If you want more legalistic resource they're out there. In fact, I'll even give you some resources below.


Friday, March 27, 2015

The Other Side of Bullying

I recently posed this question of a group of 1,000 Dad Bloggers:

"With bullying getting a lot of attention in recent years most of the stories have understandably focused on the victims. I'm wondering if any of you have had experience with, or written about, being the parent of a bully. I feel like it's a topic worth addressing, but I haven't seen anything out there."

I got two replies.

Now of course, as with any survey, especially a Facebook group survey, you don't know how much engagement you're actually getting. I have no idea how many dads saw the question. Still, two is a very low response rate.

Of the two replies one posited that it could be a hard thing to write about because of embarrassment or potential legal issues. Another told a story that I think is typical of how we tend to envision the parents of bullies as being bullies themselves. The story was told by a teacher who had intervened in an act of bullying in their class. Later, the father of the bully confronted the teacher in an aggressive and intimidating manner. To this teacher the source of the son's bullying behavior was clear. And I think that's a pretty typical narrative of what we think of when we think of the parents of bullies. The parents are also bullies, or abusers, or absent, or neglectful. Essentially, we often explain that kids are bullies because they have bad parents.

Another of the dad bloggers offered this, " I bet there are decent normal parents whose kid for whatever reason is violent or aggressive or intimidating."

I'm guessing that there's other stories out there as well. I imagine there's some shame associated with having a kid who's bullying. Maybe that's why we haven't heard the other stories. You'd think that just by sheer statistics that there are other circumstances, people who are trying to do everything right and still ending up with these behaviors from their kids. I'm curious about that.

There was a time when I was worried that my son was becoming a bully. It was devastating to think about. I was worried about having to face a lifetime of calls home from school and having to face angry parents a the PTA. It turns out, as I learned from a couple days observing the classroom, he was just being a normal 5 year old. But I think it could be a great resource for parents if people who had experience were willing to share.

Hopefully, by sharing those experiences we can look beyond simply blaming the parents. I later found this post on Punk Rock Papa where the author asked his Facebook followers a similar question. He also received minimal response. He lays into the problem pretty well for those of us who appreciate a good rant. There are two points he brings up that I found echo my own views. One is that we don't know anything about the parents of bullies, and that's a huge gap in our knowledge that leaves a dearth of positive tools for us to use in dealing with bullying. Second is that the Hollywood solution of round house kicking your way to a better tomorrow doesn't give our kids skills to apply later in life. As the author notes, kicking your bullying boss in the face isn't going to fly with upper management.

So where do we go from here?

For me the the interest in answering this question is two-fold. For one,
I've always been small, and I grew up being bullied. It shaped me and my interaction with the world way more than I realized until I was about 30. Basically, I saw anything that could be a potential injustice toward me as a fight. So I took an aggressive stance towards everything and everyone around me because I didn't want to allow an opening where I might be bullied. It was very counter productive. Fighting isn't the best strategy, the effect of fighting lasts long after there are fights to be had. Second, if my son does start bullying, I want to know if there's anyone else who has been through this. I want more tools to deal with bullying from the side of the perpetrator. 

The discussion with the dad blogger group led to another post on Tenor Dad where the author talks about his own experience being a bully. He discusses what led to his time bullying another child, and talks about how he plans to try to prevent creating future bullies. Tenor Dad writes,

I would be devastated to learn that my children were being bullied, but how much worse would I feel if I found out that they were the ones doing the bullying? No parent wants to believe that their child is capable of such things, but I can tell you that every child is. I was. You were. We have all been mean to someone at some time, and we all know how it feels when someone is less than kind to us. When the day comes that I am sitting on the couch, comforting a child who has borne the brunt of some juvenile cruelty, I will console them and I will hold them, but I will also ask them to remember that feeling anytime they are tempted to deal harshly with anyone else."

The victims of bullying deserve all the attention they have gotten, and will continue to get. I hope that by trying to take a more 360 degree view of the issue we can help parents of bullies to get involved in reducing bullying.

Wednesday, March 25, 2015

My Child is Special Needs, Until She's Not

I sometimes feel guilty when I say that my child has special needs because I know that it's a cheat. Sort of.

The thing is, I know her needs will end, where as for so many parents of special needs children it will never end.

Lou was born with a surprise complete bilateral cleft lip and palate. In hindsight it was actually perfectly clear on the sonogram, if you knew what to look for, which my wife and I did not. We would have expected our midwife to catch it, but since she later lost her license after several instances of gross malpractice it's no surprise now that she missed it also. But it was a surprise at the time. Sort of. (UPDATE: T tells me the radiology person should have seen it, not the midwife.)

My uncle had been born with a cleft lip and palate, but only on one side. This was in the 1950s, in Pakistan, where my grandfather was working for some kind of NGO. The story that was passed down to me was that by the age of three my uncle was still just babbling. Doctors told my grandmother that because of the cleft my uncle was retarded (that's what they called in 1959) and would never learn to speak. It turns out he was just speaking a very obscure dialect of Urdu, which he learned from spending 10 hours a day with his nanny. While T was pregnant with Lou I used to joke that she was totally going to have a cleft. Then she did.

Lou was born at home (with a different midwife, not the one who lost her license) so we had no idea what to do with her. This was the midwife's 700th birth and it just so happens that the instance of clefting is about 1/700. She didn't know what to do either. Within two hours were at our pediatrician's office, and an hour after that we were the cleft clinic open house at our local hospital. We were lucky that Lou had been born on cleft clinic day. Right there we met the entire team that would be responsible for her care for the next 18 years. everyone who came in with her chart (case manager, surgeon, audiologist, speech pathologist, ENT, geneticist) did a double take when they read that T had delivered three hours prior and was sitting there asking questions about Lou's future. (T is a super hero). All the specialists kept using the phrase "severe facial deformity." That wasn't fun, especially since she was so cute. The worst part of the trip was learning that Lou would not be able to nurse. The best part was learning that early and being given the special feeders she'd need.

So we took her home and immediately nick named her "Zoidberg" because that is how we cope with stress.

People hear about her cleft and the first comment they usually offer, "Oh, well that's no big deal. They can fix that now." And they're right. Sort of.

The clefting is a relatively easy fix, especially the way they used to do it in the 1950s, all at once and right away. I assume they dealt with the further issues later, but I don't really know. No one in my family seems to remember. But right, she'll have totally normal function by the time she's 20. She'll always have a scar and she'll never have cupid's bow, and part of me will always wish she'd been a boy, because boys have an easier time looking a little rugged. Peyton Manning had a cleft, he's not considered ugly and I bet you didn't even notice. (You can hear it in his speech if you know what to look for).  But she'll be fine.

To get to that point though she will need three or four surgeries on top of the two she's already had. All told it's a lip closure, palate closure, nose job, jaw realignment, tooth insertion or removal (depending on what her teeth do), and a possible palate lengthening (to help produce speech). But after all that she'll be fine. If it seems like a lot (or even if it doesn't) it's a lot. Seeing a three month old baby come out of anesthesia with a huge scar on her face is not fun. Having to do it again seven months later isn't fun.

The surgeries made feeding complicated. Well, more complicated. That T was hell bent on only giving Lou breast milk for the first year was also complicated. That part of it meant T was pumping eleven times a day at first, for 40 minutes or more each time. She later reduced that to about eight times a day. Still, that meant that not only did we have to plan every outing anywhere at any time around T's ability to pump, it also meant that even when she was at home she wasn't available half the time. This second fact was especially hard on our two year old son. That much pumping was also draining for T, both physically and emotionally. She happily nursed our oldest for two years. Spending twelve months as a dairy cow was not as rewarding.

I know how this reads to people who have experience with special needs children, "Being inconvenient isn't the same as a really having special needs." You're right. But there's more. Lou qualifies for and requires special services. She's had free in home speech therapy through the county. She'll have IEP and qualify for early entry services in public pre-K. This means dealing with the admin side of having a special needs child. Lots of meetings, and follow up meetings. She faces scrutiny in public, from honest comments from other kids, to ignorant comments from adults, to teasing on the playground. Luckily all of these have been rare so far, but I worry about her going to school. Still, by the time she's 20 she'll be totally "normal."

That's why it feels like a cheat. That's why I feel guilty saying that my daughter has special needs. Because even though that's true right now, it's going to end, and the end is going to be fine. Meanwhile I know people who have kids that really have special needs. Kids who have had open heart surgeries within minutes of birth. Kids who eat through tubes. Kids who have cognitive or neurological issues that may not ever go away. Unlike some parents I won't have life long fears for her. Her situation isn't life threatening. With a series of painful and invasive medical interventions she'll grow out of it. So whenever I think about the things Lou needs that my other kids don't, whenever I schedule a determination meeting or register for support services I feel a little guilty. I feel like there should be another category for people like us, for people who have short term needs. I wish there were a category that didn't make me feel like I was disrespecting the struggles of other parents who don't have a light at the end of the tunnel.

Photo by Jessie Ambler Photography

Friday, March 20, 2015

Why I Went to Ferguson

It's now the end of March, 2015 and the DOJ has released their reports on the shooting of Michael Brown and their investigation of the Ferguson Police Department. The reports are mixed if you're a proponent of the "Black Lives Matter" movement. I'll admit, I haven't read the reports themselves, and I probably won't. I have read about them and the conclusions seem to be that while the department was rife with racism and rights violations, the shooting of Michael Brown was likely not the injustice we believed it was. Whether the DOJ report sways you or not is up to you. I personally believe in the DOJ investigation, in part because I supported the call for them to investigate and I feel like I have to stand by the result. That may seem weird given that I did not stand by the findings of the grand jury who examined the case. But I have more faith in a Federal investigation into this kind of crime. I also still believe that Darren Wilson is guilty of something, even if I don't know what that is, and I firmly believe that there could have been, and should have been options available to him in subduing a suspect under these circumstances. Though our understanding of the facts in the Brown case may have changed, that doesn't change the importance of the "Black Lives Matter" movement, which has become about more than just Michael Brown.

Even with that exhaustive introduction, I'm not actually here today to discuss the merits of the DOJ reports or the case itself. I know that while I have outrage and consternation, I don't have any insight into that aspect of the case. Instead I'd like to go back to August of 2014, when I went to Ferguson.

I'll be honest, even after the decision was made I didn't know why I was going.  Well, I knew why I was going. I was going because my wife had decided that the only thing she wanted for her birthday was for us to go to Ferguson, to march, as a family. In a way I understood. We had been sitting watching things unfold with a feeling of total helplessness. Posting on Facebook to an audience that was largely already on our side wasn't very satisfying. We wanted to help, but I didn't know what going to Ferguson would accomplish. There were already people there, what good, what difference, would the four of us make? But I am notoriously bad at giving gifts, so when my wife proposed this trip I agreed without hesitation. I wish I could say I made the decision for a more noble reason, but initially it was really just so I could give my wife something she really wanted for her birthday. So we decided to make the seventeen hour drive to Ferguson on a Friday night (so the kids could sleep the whole way and feel less of an impact) and come back Sunday night.

In the days leading up to the trip, and on the drive we talked about our goals for being there. My biggest fear was that we would end up as "Disaster Tourists." My wife's feeling was that she wanted to go for several reasons. She wanted to show that non-Black people care about these issues. She wanted to be a white face in the crowd in order to show that this is an American issue, not just an African American issue. She didn't mean that in the tone deaf manner of the misguided "All Lives Matter" people. She wanted to show that people of different races, and from different places, care about what's happening in a small suburb of St. Louis that most of us had never heard of before. She also wanted to show the kids that activism is important. We had been talking with them about Ferguson for a couple weeks at that point, and she wanted them to see that you can get involved in world events, rather than just sitting back and watching them unfold. I agreed with these reasons, but I was still uneasy.

I didn't actually do any marching in Ferguson. I dropped off my wife and daughter at the march and went off to secure our motel and get some sleep, as I'd done the bulk of the over night driving. Later on I drove to pick them up at the same McDonald's where police had harassed journalists in the early days of the protests. Driving down W. Florissant Ave. past the burned out gas station and the boarded up BBQ place that had a Clerks-like "We're open" spray painted on the outside was surreal. The thing I noticed though, was that at that time Ferguson had the most polite drivers and pedestrians I'd ever seen. Whatever was happening in that community had either created, or maintained, incredible civility towards each other. The McDonald's parking lot was packed, but no one was frustrated. People waved other drivers ahead, merged efficiently, and allowed pedestrians to pass. The pedestrians checked and made eye contact and acknowledged the drivers. It was astounding. The sense of community was palpable.

I started to figure out why I was there as I started to interact with people. The 900 mile trip meant we needed an oil change while we were there. While sitting in the car at the Valvoline on W. Florissant the attendant asked us why we in town. She was clearly surprised by the answer that we were there to protest. "Why?" she asked. At that moment, in that conversation, it was clear that we were there to do more than just show up and observe and be seen. We were there to meet people and talk to them, and to show that the media attention had an actionable result. The woman at the Valvoline and many others we met seemed both surprised and appreciative of the idea that the protesters could inspire a family to not only agree with their message, but to come down to hear it first hand. We were there to represent people from other parts of the country. We were there to show the community that they were not alone, that their message was being heard.

We went to church at St. Stephen's the next morning. The priest, as we expected, discussed the on-going situation in his sermon. The parish welcomed us and wanted to hear our story. They asked if anyone was celebrating a birthday, and I outed my wife who was given a cross on string as a gift. We saw what the church had been doing in the weeks since the Michael Brown shooting. They had an overwhelming pantry of donated food and clothing. The parishioners told us they had been serving many hundreds more people since the protests began than they did during calmer times. They were also re-donating food to larger shelters and congregations. People had come to them saying that there were older people in the Canfield area who were in need of food and toiletries but couldn't go out for them because they were either afraid, or because the stores were closed. The church was trying to find out how to identify these people and get them supplies, while also being unobtrusive.

Talking to parishioners helped to understand another reason for me to have made the trip. I was there so that people could tell me their views, and I could bring them back to my community. The view of the people I talked with was that they were with the protesters, and against the rioters who they saw as being an outside element. They wanted people to know that their community was generally peaceful, but that they were all fatigued by the kind of injustice later revealed in the DOJ report. They wanted people to know that they were a normal community going through a tough time, and pulling together, and supporting each other.

That's what I witnessed. That's what I brought back with me. That's what I told people in conversations about Ferguson. The people of Ferguson are ordinary people, just like people in any other city in America. All they want is to be able to get up and go to work and live their lives without being harassed, or beaten, or shot. They are people who decided they'd had enough and rose up and said so.

Regardless of how their community is portrayed, or reported on, they just want the message to come through that they're us. So that's why I was there, to internalize the experience, and the message. To try, in a small way to remind the rest of us that the people of Ferguson are just that, people. Regular people, who were put into an unusual circumstance, who helped shift the national focus and the national conversation, but who want us to know that they're really just us.