Uncle Dale’s “You Probably Should Know”: Title II (Part One); First,You Have to Know This!

(Vlog to come!)

Hello everyone!  It’s been a while since this topic has been on the table. But. The fun continues!

Just to let you know I was going to do all of this in one post… but, I want to keep the vlogs to around ten minutes of less and WOW there is a lot to discuss here!

If you remember the vlog on Title I, you know we start Title II with a confusing question (if you don’t know what I mean go back and watch it! Seriously).

Title I of the ADA was passed by Congress using the authority of the 14th amendment and the Commerce Clause (we will discuss the Commerce Clause when we talk about Title III).

Alabama challenged Congress’ authority to obligate the States under Title I, because Alabama said there was no Proportionality and Congruence (oy! I get to spell that again!) in other words Congress failed to show that there was a history of discrimination by States that was pervasive enough to overcome the 11th Amendment (Sovereign Immunity).

Remember that the Congressional history cites like 50 or so pages of individual discriminatory acts, in alphabetical order, State by State.

Despite page after page in the congressional history documenting discrimination (if you don’t know what I’m talking about go back and watch Title I) the Supreme Court agreed with Alabama and gutted the application of Title I in regards to State employers (but not counties, cities or towns… it’s a federalist States rights thing… and not as Title I applies to private businesses, because Congress’ authority for private business came from a different place in the Constitution, the Commerce Clause-we will get there!)

So.

What about Title II?  Title II also burdens the States and also uses the authority of the 14th Amendment. ONLY the authority of the 14th Amendment!  So if the Supreme Court decided that Title I was a no go… what about Title II?

Therein lies a story.

After Title I went south those attorneys who, like me, fight for the civil rights of people with disabilities were, how to put this… losing their cool.  If the 11th Amendment is king (ha! pun!) then Title II could go away forever!  All of it.  So the search was on for the perfect Plaintiff. Someone who the Supreme Court could not refuse (or the public would identify with).

Maybe a camera ready, noble single mother between 23 and 33 with two adorable waifish children who was refused a vital government benefit or service by an evil government functionary because of her disability…

What we got was George Lane.

Lane used a wheelchair for mobility after a 1997 car accident in which he was accused of driving on the wrong side of the road. A person was killed in the crash, and Lane faced misdemeanor charges of reckless driving.  Needless to say, he was not the Plaintiff they were looking for.

His Title II case arose because when he showed up for court at a venerable old Tennessee Court House.  Since the place had no wheelchair accessibility (no elevator), he would have had to resort to crawling up several flights of stairs arm over arm dragging his wheelchair to access the courtroom in which he was required to appear. When he refused to do so he was charged with failure to appear and jailed.

As I said, not exactly a “made to order” Plaintiff in the uncertain “post-Garrett” world and absolutely NOT what we were looking for-but his case is what was granted certiorari so that is what showed up in front of the Supreme Court.*

Tennessee made the same argument as Alabama; Congress had no authority to obligate States under the 14th Amendment because it failed to prove a history of discrimination by States toward people with disabilities; no Proportionality and Congruence.  Once again the Solicitor General of the United States pulled out the many many pages documenting discrimination, State by State, in alphabetical order.  This is the same list that the Supreme Court said was not sufficient to overcome the 11th Amendment for Title I.  The United States made roughly (Read as exactly) the same argument and the Supreme Court said… yes there is a sufficient history of discrimination to abrogate the 11th Amendment under Title II.

What? ok. What?  (take a deep breath…) think it through. What is the difference between the two cases?

The reason the Supreme Court found the list of historical discrimination insufficient for Title I but sufficient for Title II is simple- you have no Constitutional Right to a job

But you do have a Constitutional Right to access the Courts.  In the Sixth Amendment, its written right there.

But…

What does that mean for State entities that are not Courts?  What if it’s a State university that has discriminated? Or a State Hospital like the University of Alabama, only you didn’t want to work for them-so it’s not Title I-you wanted to access a benefit, program or service they offered? Does Title II apply then? Remember the Supreme Court said it found in Lane’s favor because of the Constitutional promises of the 6th Amendment… so does that mean you have to have a Constitutional violation to make Title II work?  The Supreme Court hinted that no, you did not, but then decided the next case involving Title II (US v Georgia, a prisoners with disabilities facing discrimination) in part because it involved 8th Amendment violations (cruel and unusual punishment).  As much as they hint that Constitutional violations are not required, this only Title II cases they have decided they attached to Constitutional violations.

Here is the real problem. If I was a State agency (but not a state court) and was reading the Lane decision I would think that it would in the best interests of my agency, from a strictly cost benefit standpoint, to deny any and all requests made for accommodations under Title II if there is no obvious Consitutional violation attached.

Think about it.

Look at the costs to my agency of providing interpreters to persons who are Deaf.  I can save that money in my budget by not providing interpreters.

Here is the analysis.

If I deny every request for and interpreter, not every person who is Deaf will have the will to file a Title II lawsuit to enforce their Rights; If they do, not every person who is Deaf will have access to the resouces to bring a Title II lawsuit to enforce their Rights; and if they have both the fire inside and the resources to bring a Title II lawsuit against my agency (can’t sue me personally under Title II), if there is not an obvious Consitutional violation (you have no Consitutional Right to most State programs or benefits) Title II may not even survive a challenge using the 11th Amendment defense.

Depressed?

Feeling like the law that you thought promised equity to persons who are Deaf is just mostly… worthless?  I cannot fault you for that, because the effectiveness of Title II is highly suspect outside of a Constitutional violation (please remember this is only an issue when it comes to States with a capital S, not cities or counties or towns…).

But…

Remember that Section 504 cannot be interpreted to provide less protection than Title II of the ADA if 504 covers the same subject matter as Title II.

Remember also that 504 applies any time a State agency accepts federal money.

Finally remember that following 9/11 the Department of Homeland security Made IT RAIN BABY! It would be a rare thing indeed to find a State agency that had not accepted federal funds.

Finally, remember that the courts have determined that by accepting federal money States have agreed to permit themselves to be sued under Section 504 and give up 11th amendment protections.

Whew.

We still need to talk about the Authority Congress used to pass Title II because despite all the problems I just showed you IT’S STILL GOOD LAW in every city, county, town, township, school district, water allotment board, zoning board, county animal control, county health department, library…

It’s worth knowing!

So. Title II and its Authority is next.

*there was in fact a second Plaintiff. A woman named Beverly Jones who is a court reporter who used a wheelchair and could not work in the second floor courtrooms for the same reason George Lane could not access them. I know what you are thinking, employment is a Title I issue and that is already not available to —- Ah. But —- is not an employee. She is an independent contractor. That is a different story and one that has a huge impact on interpreting.

We will discuss the issue of how independent contractors get protected under Title III in the very near future.

Uncle Dale’s You Should Probably Know… Why You Know What You Know.

This Note is NOT intended to be legal advice. This Note is because I am frustrated! Talk to an attorney in your area if you have an Overpayment!

This post is the very definition of “Preaching to the Choir.” I know that I am complaining to an audience that already understands my frustrations but feels they can do little about it.

However, if you read to the end (its long, I’m warning you) I think you may find you can have more power than you think, if you do one thing.

I sat through another hearing at the Social Security Administration (hereinafter “SSA”) this week. As always I am representing a Client who is Deaf and who had an Overpayment of many thousands of dollars.

If you have ever interpreted for an over payment hearing (or several such hearings) you are likely just as stymied by the “script” the Administrative Law Judges use when prosecuting an Overpayment case involving a person who is Deaf as I always am.

The script the SSA has used for years is based on a stereotypical hearing caricature of deafness as it is presumed to be by hearing people, but it has no real connection to any of the realities of the life of a person who is Deaf.

As an interpreter I would listen to this script and, though my face showed only the grammar and non-manual markers needed to present an equivalent message, behind my eyes my blood would boil every time!

“Did you receive notices from the SSA explaining your obligations to report employment?

Did you inform the SSA that you were working?

Do you read for pleasure?

Do you read newspapers (they have adjusted it to newspapers or online)?

Do you read novels?

Do you communicate with others in writing? By text or email?”

The idea behind the script is if the Deaf person reads for their own enjoyment, and they received the notices from the SSA, then they must have known they did not deserve the benefits the SSA kept sending them long after they no longer qualified-because they were working.

These questions are so steeped in an Audist, hearingcentric view of deafness that just writing them makes me want to reach for an airsick bag.

As an interpreter perhaps the only thing worse than the SSA “direct examination” script was listening to the counter arguments offered by well meaning attorneys representing Deaf people.

Because the only defense hearing attorneys could seem to mount to these improper questions was to portray their Client as poor, pitiful, uneducated and innocent. To say it bluntly, a person too stupid to know any better.

Over and over the attorneys made the argument that Deaf people can’t read well enough to understand the notices from the SSA and so they are unable, by reason of their disability, to be at fault because they could not possibly understand how SSDI works.

It was ALWAYS degrading.

I remember thinking to myself “if only I was the attorney.”

Now I am the attorney.

I have represented Clients who are Deaf in Overpayment hearings many dozens of times. I make a new argument. An argument based on the difference between what the SSA thinks it means to be Deaf and what is actually true. It has been very successful, because the clarity of truth is hard to refute.

Before getting into the argument, it’s important to understand that in order to prevail in an Overpayment case the person who is Deaf must prove two points:

A) the person who is Deaf was not at fault for the Overpayment; and,

B) the have no means of paying the Overpayment back or to do so would be unfair or defeat the purpose of giving the benefit in the first place.

The second part is really just a matter of math, as in what is the Client’s income when compared to their obligations (bills).

But the first part, now that is a little more complicated. It is quite common for a person who has been receiving benefits to report to the SSA that they are working and receiving substantial gainful pay (meaning that the person would not qualify for the Social Security Disability Insurance payment) but for the SSA to keep sending them checks. In other words the client does everything they are supposed to but the SSA doesn’t stop sending the money. The problem is that SSA policy states that the receiver of benefits is responsible to keep track of when they qualify and when they don’t, so even if my Client did everything they were supposed to and the SSA didn’t then my Client is still at fault.

It was hard enough for a receiver of benefits to keep track of this when the SSA sent paper checks, but now that it uses direct deposit it is even more subtle and thus harder to track.

Either way many people, not just people who are Deaf, figure “I reported everything the SSA asked me to report and it kept sending me checks. It is the SSA, it knows more than me, so I must still qualify.”

What is actually happening is that the SSA is a seven headed dragon. Everything must be reviewed and checked and approved and reviewed again and then sent to 20 different departments before any change in status actually happens. So it can take months to stop sending checks.

In the mean time, like I said, the SSA’s policy is that it is the responsibility of the person receiving the benefits to keep track of whether or not they qualify. So even if the SSA keeps sending checks for months after the Deaf person reports they are working, it’s considered the Deaf person’s fault, not the SSA’s (if the SSA computerized this system it would reduce if not stop this issue, but hundreds if not thousands of mid-level SSA employees would no longer be needed and no government official wants to be responsible for so many people losing their jobs, so here we are).

Add to this the SSA’s myriad “employment bridging” programs, ticket-to-work, trial work periods and extended trial work periods. These programs are intended to support a receiver of benefits while they begin the transition from SSDI to employment and allow a person to work while still receiving benefits; temporarily, with specific rules and exceptions too numerous to list. These programs, while well intended, have become Overpayment traps because a client may be covered by more than one of these “employment bridges” each program having different rules and timeframes.

In short, just working doesn’t always mean my Client didn’t still qualify for benefits.

In order for my clients to prove that we’re not at fault for the Overpayment (they don’t have to prove the SSA was at fault, only that they were not) the Deaf person must show that it was reasonable to believe that they still qualified for the benefit or that it was not possible for them to know that they did not qualify for the money.

They can argue perhaps that an employee of the SSA told them they still qualified when they actually didn’t.

They can also argue for example that the SSA did not provide them with sufficient notice that they no longer qualified.

My argument still addresses both of the standard defenses, but in a way that focuses on the actual issues at play, not the stereotypes.

So, this is the argument I use to explain why my Client who is Deaf is not at fault for the Overpayment (all cases are a little different so I will use some specific examples from different cases).

THE ARGUMENT

“Your honor, I am going to ask for some leeway in my opening statement because it will different than you are used to.

As it will be different from your expectation I may need a little longer than you are comfortable to lay out my case, but this issue is complex, so I ask for your patience. Feel free to stop me and ask me questions, but please allow me to lay out my whole case, because it may save time on the back end.

The reason it may save time is that you have a “script” of questions you will want to ask my Client, all ALJs ask my Clients who are Deaf similar, if not the same, set of questions. They always have.

But, I intend to show that these questions do not lead to evidentiary verification for or against any issue before you today, and so when I finish this opening statement you may not feel the need to go through the the Script.

The reason these question don’t get you the answers you seek, specifically ‘whether or not my client is at fault for the Overpayment,’ is because the questions are founded on a fundamental misunderstanding of Deafness within the context of disability as it is commonly understood.

When you think about “a person with a disability” the first thought that pops into your head is ‘a person who uses a wheelchair.’ That is natural because it’s the symbol used to identify the whole idea of disability. It’s on parking spaces and accessible bathroom stalls.

When you think, ‘if I was a person with a mobility impairment what would I need?’ Most of us can answer that question with a high degree of accuracy. Ramps. Widened doors. Lowered counters and drinking fountains…

The reason you can be pretty accurate in your assessment is that most of us have actual experience with mobility impairments. We broke our leg at one time. Maybe we had a parent, an aunt or uncle, a grandparent, sibling or friend who used a wheelchair and we had firsthand experience with the real world issues attached to it. We have a mental framework for mobility impairments that is constructed of practical experience.

However, when you apply that same process to persons who are Deaf you lack any such framework.

Hearing people have no practical experience from which to draw. So we attempt to apply the same framework we use for mobility impairments. We think, ‘if I was Deaf I would… not want to be Deaf!’

That’s obviously unhelpful when applied to our current situation.

‘So, if I was Deaf I would… read-lips.” The reality is that reading lips is much less useful on a daily basis than movies would have us believe. The BEST lip readers rely mostly on context and guesswork. But most people who are Deaf have no more ability to read-lips than you or I. They have practiced more of course, but lip reading is like playing the piano. Some people have a natural talent for it, but most people could practice all their lives and may be able to plunk out the notes but will never make the music.

‘So, if I was Deaf I would… read a lot and write really well to communicate.”

Again this is a misconception that hearing people have about people who are Deaf. I’m sure you have heard the argument that people who are Deaf graduate with a fourth or sixth or elementary school reading level. Which is generally true, but not the point (I have clients who write beautifully and their notes are in the file). I am not going to make the argument that you have to have pity on ‘my poor uneducated client’ I’m going to talk to you about ‘gaps.’

I work at a university in the area of Deaf Studies. I work with highly educated, well read people who are Deaf; Many possessing Ph.Ds. Sooner or later when having a discussion with these very educated people I will mention something, something you or I would take for granted that everyone knows because it was all everyone was talking about at one time or another; and I will get a blank look back. At that moment I know I have stumbled across one of the ‘gaps.’ I have brought up a piece of knowledge that you or I just accept as commonly known but they have never heard of because no one ever had that conversation with them.

Think about it. Ninety percent of the really useful knowledge you have, the stuff you use every day, you didn’t learn by someone teaching it to you; you overheard it.

For example, what day do you pay your taxes? April 15th. Did anyone ever sit down and tell you, “ALJ [name] on April 15th you pay your taxes.” No. Of course not. You were sitting on the floor playing with your toys and someone, maybe your mom or your dad, kicked the door open and complained, “every April 15th the government picks my pocket…” and you thought, “April 15th? That’s important,” and you filed it away. Bit-by-bit you overheard more and more from conversations or the radio until you built a full understanding from this ‘ambient knowledge’ that just floats around you and is yours for the taking.

People who are Deaf have limited access to those low hanging fruits of knowledge. They tend to get their usable knowledge from direct instruction. As a result if something that everyone knows has just never come up in conversation directly with the Deaf person, that Deaf person has a gap in their knowledge when compared to the general population.

It’s not about reading or intelligence, it’s about knowledge gaps.

You have in front of you a script of questions that is supposed to determine if my Client can read at a level sufficient to understand the notices you sent in the mail. You plan to ask things like, “do you read novels?” Or “do you read newspapers?” Or “do you read for pleasure?” These questions are derived from a stereotypical hearing view of Deafness. No matter what my Client answers you will have no more understanding of their capability to comprehend the written notices SSA sent than you do now. Because these questions do not account for the knowledge gaps. If you ask, “do you read novels or for your own enjoyment,” you are ignoring the fact that my Client picked the novel. If my Client doesn’t understand or struggles with it they just stop reading it.

We are talking about notices from a federal agency, with legally operative language regarding complex calculations and complicated programs. These are not novels. My Client is not choosing to read these notices, you are expecting them to. The SSA sent them with the expectation that my Client cannot just put the notice down or stop reading it if they didn’t understand it because it includes concepts or ideas that fall into a gap in their knowledge base.

Most of the notices do contain language describing concepts or ideas solidly within the gaps because who just casually discusses the programs of the SSA?

‘Ah,’ you think, “but it is your Client’s responsibility to find out the meaning of the information on these notices that they don’t understand!”

True.

How?

My Client, according to the records in your file, had 20, or 30, or in one case 123 documented visits to SSA and in the file I can find no documentation that SSA ever provided an interpreter, except for one notable occasion. The one time I can confirm that SSA has provided an interpreter is today. It’s that one. The one interpreting this hearing today.

(Sometimes, sometimes I do find notations that an “interpreter” has been provided. Almost always these notes appear after my Client has already incurred several thousand dollars in Overpayments. Prior to the “informal” or “formal” conferences following a request for a waiver there are notations like “explained to recipient the SGA reporting requirements,” attached to about half a page of nonsensical notes. For most of my Clients the marked change appears to be that SSA suddenly gets concerned about providing the Deaf person effective communication when it is trying to reclaim an Overpayment, but has very little interest prior to that.

On more than one occasion there have been notations that said, “Provided Interpreter,” but when I dug a little deeper the notes said, “saw a person in waiting room that I recognized as knowing ASL and asked for his assistance.” I want you to think about that. Not the fact that no name or means of identifying the “person in the waiting room” or verifying that he actually had any ability to Sign is included. No, the fact that I have seen this notation more than once. Sigh.)

At this point the ALJ will often ask if my Client has ever tried having a friend or family member explain the letters to them.

Of course they have.

But that is assuming the friend or family member has any idea what the letters say. Even if they do there is only so many times you can bother a friend to help you read a letter.

Furthermore, my Client is 30 or 40 years old or older. Do you ask your parents to help you read things you don’t understand? It’s embarrassing and infantilizing.

Sometimes the parents are the issue. I have had cases where the parents “help” their children sign up for benefits then try to manage them, you know, to help out, well into the Clients 20s. Sooner or later the parents get sick of it and drop a milk crate full of letters at the Client’s doorstep. Often this is the first time the Client has any clue there is a problem, “here is a $22,000.00 Overpayment for you. It’s your problem now.”

The Clients parents show up at the SSA offices with the Client to “try to help,” and have a good conversation with the person at the window, very little of which ever gets shared with my Client. I have read files where the SSA has called the Client’s parents to ask questions or provide information when the Client is maybe 34-years-old and never gave permission for the SSA to do so. When I point this out the ALJ says, “there is nothing on file indicating that [the Client] has a Representative Payee.”

Exactly.

Just because it’s not allowed doesn’t mean it doesn’t happen (they sometimes even document the calls in the file)!

In the end I have to point out to the ALJ that it is not the responsibility of the Client’s friends or family members to explain the in’s and outs of SSA correspondence or policy. It’s the SSA’s responsibility.

And they consistently fail in that responsibility.

I will sometimes find a file where the SSA has provided and interpreter on four or five occasions, and that sounds great, until you realize that the Client has sought help from the SSA 20 to 30 times.

Moreover, if the Client spoke Spanish they could walk into a SSA office and be served by an SSA employee who speaks Spanish. If my Client spoke French or German or any number of other languages they could walk into any SSA office, take a number, and have their questions answered at the service window by an SSA employee through a telephone based “language line.”

Some SSA offices have installed VRI, but I have yet to see this at a service window. The Client has to make another appointment to return and speak to someone at a desk where VRI is set up. Even where it is available I have only seen it offered occasionally.

So, just like everyone else my Client may have questions about a letter they received. But, unlike speakers of almost any other language, people who are Deaf are not offered a viable means of getting their questions answered.

The SSA affords my Client less than half the access it gives everyone else, but is attempting to place 100 percent of the liability on my Client.

My Client filled out the forms you mailed. My Client reported that they were working. After that the SSA kept sending them money. Without a viable means of asking questions it was logical for my Client to assume the SSA knew it’s business and they must still qualify.”

At this point I ask the ALJ if they have any questions that I or my Client can answer.

A standard question is something like, “surely you understood that when you worked you no longer qualified for benefits?”

“No.”

If I may, your honor, it is not always the case that when my Client worked they no longer qualified for benefits. My client was on a trial work period and then an extended trial work period. As you remember the record shows this was all done without an interpreter. Even I have a difficult time following the rules on those so there is little chance the requirements were explained to my client in an understandable manner.

“But surely,” the ALJs press on, “surely they must have suspected something was wrong when they got the letters from the SSA!”

Yes your honor, of course my Client suspected something was wrong. That is part of the reason the record shows they went to the SSA office 43 times.

****

Most of the time the hearing is pretty much over at that point.

Like I said at the beginning this Note is mostly me unloading frustration, but not completely. Please understand that the SSA is the example I used to make my point, but it is not the issue. The way SSA Overpayment hearings play out is a symptom of the problem I’m talking about, not the problem itself.

Here is the problem. We, meaning interpreters and the Deaf community, perpetuate the foundational stereotypes behind the SSA’s Audist line of questioning. We do it each time we repeat to a doctor a trope like, “people who are Deaf can’t read well enough to understand a written medical discussion.” Although this statement may be rooted in a historical truth, it is not altogether true.

Now, the doctor has usually had a lawyer explain that according to the ADA the doctor, not the patient who is Deaf, chooses the accommodation (they usually stop listening at that point and most miss the second half of that statement, “so long as it affords effective communication”).

Rarely do I ever meet someone who wakes up in the morning and says, “you know who I hate? Deaf people! I think I’ll make life hell for a Deaf person today! I’ll refuse to provide an interpreter! I’m not saying it NEVER happens, but it’s very rare!

People wake up in the morning and say, “I just don’t want to have any problems today. I just want to do everything the same way I always do it.” And many will fight hard to preserve their own status quo. If they have to deviate from their norms they want to do it in the way that seems easiest for themselves.

The reason doctor can justify not providing interpreters is not because doctors [or lawyers or accountants] hate Deaf people.

They suffer from the legacy of AG Bell’s fictional portrayal of Deaf people that he pushed as science coupled with hearingcentric logic (All Deaf people should speak. All Deaf people can read lips. Deaf people who sign are lazy… excuse the highly abridged Harlan Lane).

These stereotypes stay in place because instead of replacing them with actual reality we reinforce the unreality by feeding the stereotype.

We repeat things like, “Deaf people can’t read,” knowing that is true on some level for many Deaf people but not the Capital T truth for all Deaf people. There are some scholarly articles that show struggles with reading at a higher percentage in the Deaf community when compared to the population at large, but it is not THE reason for each person who is Deaf to need an interpreter on any specific occasion.

So why do we do it? Truth? Because we don’t know how.

It’s time we just admitted that the reason we say, “Deaf people can’t read,” even when we know or feel it’s not applicable in many situations, what that phrase really is, is something we saw or heard another Deaf person or interpreter say to a hearing person in some similar situation.

The problem for the ALJs or doctors or lawyers or accountants of the world is that each time they hear this stereotypical caricature of Deafness the disconnect between the reality of the experience of people who are Deaf and the unreality of their assumptions about the lives of people who are Deaf grows.

For example, if you tell a doctor that people who are Deaf can’t read well enough to have a written conversation about their medical care, it both challenges and feeds into their ‘hearingcentric’ logic.

It challenges their hearingcentric logic because Deaf patients write all the time, the doctor has seen it.

But it supports their hearingcentric logical unreality because it confirms what they always “knew.” In movies and on t.v. people who are Deaf read lips and write. I mean everyone knows that. So if they don’t they are either too lazy to write or trying to take advantage by forcing the doctor to pay for an interpreter the Deaf person doesn’t really need.

In the doctors’ minds they are not compelled to shell out the cost of an interpreter because of a lazy or shady patient. Think of the SSA case worker facing this Deaf SSDI recipient and how much time and energy it will take to get an interpreter when they could just write back and forth. Now the Deaf person is claiming they can’t write or read well enough to communicate but they told the SSA case worker that by writing a note… obviously this Deaf person is just trying to make their life more difficult.

Now, put it in the perspective of “knowledge gaps.” It’s not that a person who is Deaf can’t read, it’s that unless this specific issue has been explained directly there is no context for understanding what you are writing. The person who is Deaf cane into the SSA office because the letter the SSA sent doesn’t make sense to them. If the written letter doesn’t make sense why do you expect that more writing will clear it up.

This makes sense even to hearingcentric logical mind.

The patient who is Deaf may be able to read the words a doctor writes but what happens when there is a “knowledge gap” and the Deaf patient doesn’t realize they are not understanding (think of the old likely apocryphal story to the doctor writing to the patent that they have AIDS, and the patient thinks, “well duh, I’m Deaf, I have one in each ear, HIV develops into AIDS. Must be a new kind of hearing-aid developed by the HIV company”) the “knowledge gap” can hide, from both the doctor and the Deaf person, that there is even a question to be asked. It’s an extreme example but it makes sense to hearingcentric logic.

It also makes it much more difficult for the doctor to ignore where the ADA says that the entity providing the service chooses the accommodation, “so long as the accommodation it chooses affords effective communication.” (Section 504 is actually a better law for medical situations, but that is for another Note… this one is too long as it is.)

All that being said, I pose a question to you all, Deaf and hearing; did you know the requirements for overcoming a demand by the SSA to repay an Overpayment before reading this Note? An Overpayment is as common in the Deaf community as catching a cold (a $45,000.00 cold) but most of us as a general rule don’t know much about it.

Do you know that the definition of disability that the SSA uses is different from the definition under both the ADA and Section 504?

Did you know that the definition of disability used by the ADA and Section 504 is slightly different than the definition of disability used by IDEA?

Have you in the past 12 months discussed any of these laws using, as fact, information you learned from a discussion with an interpreter or other member of the Deaf community?

This is my point. We work and live and discuss truths and laws each day, but most of us don’t really know much more about them than what we “learned” from other interpreters or Deaf community members-who we must realize may not have known anymore about than they heard from other interpreters or community members.

I teach a course on laws that impact people who are Deaf in the interpreting program I oversee.

I got a message this week from a former student expressing her thanks for teaching her enough about these laws to understand when things are going wrong at the school district where she works and make an informed argument to fix it.

It’s not about pulling out the IDEA or the ADA as a scare tactic.

It’s not about being an authority on all things Deaf or legal.

It’s about knowledge.

Knowledge is good.

Knowledge is power.

The person who understands the least loses, every time.

Here is my point (yes I do have one!) the reason these ALJs don’t know their questions are useless is no one ever pointed it out. The questions seemed fine to them because they fit a concept that made sense in their hearingcentric logical minds and the lawyers always mounted a defense that responded to the questions but did not question the questions themselves.

The questions don’t make sense when examined within reality.

So. That’s a lot to take in. Now, what am I expecting you to do with all of this? And when I say you I am speaking to the community of interpreters, I welcome the Deaf community to join in this journey but I would not presume to make such a demand in a house where I am a guest.

Stop just repeating things you hear from other interpreters (or even from random members of the Deaf community. Start finding out for yourself. Begin by looking into things you “know” and try to figure out if you actually know them and, if so, why do you know them.

As we’ve seen we know that writing is not an effective means to communicate technical information or explanations of procedures or processes with people who are Deaf. But now we have an idea of why we know it. Not a complete picture by any means, but it’s better than, “I don’t know why but everyone says it’s a fact that Deaf people can’t read…”

We know it’s rude to not introduce yourself when you see people using ASL but do we know why we know that? (If I pose this question in my classes someone always pops up with, “it’s so the world is a more accessible place… or maybe…) it’s because it is hard to have a private conversation in a visual language and it’s a warning that other Signers are around.

We know that people who are Deaf give ten minute introductions, but do we know why.

It’s not enough to know, we need to know why we know.

We need to learn the laws and policies that impact our work and Clients lives everyday, if for no other reason than to stop bad information from being passed around.

If we as an interpreting community do nothing more than make sure we understand the world we work in, it can literally change everything by weeding out the bad info we perpetuate through casual conversation with each other.

We need workshops not only on interpreting but also on cultural rules, taught by expert Deaf instructors who have studied these rules so we understand the culture in which we are guests.

We need to have workshops on legal topics, like how Social Security Overpayment hearings work, even if we don’t currently plan on ever doing legal interpreting. If we do plan on interpreting administrative hearings we need to better understand the process.

Workshops covering not just what the ADA or 504 or IDEA say, but the authority on which each law is based so we understand why it does or does not do what we think it does.

We need as a community of interpreters to be interested in understanding why we know what we know.

That critical mass of informed people will begin to inoculate the world around us against the spread of bad information based in hearingcentric logical unreality.

That will go a long way to reducing the number of Overpayment hearings I have to do or doctors i have to sue. It may even result in better laws, or at the very least, force me to come up with a new argument at SSA hearings. That would be a win all by itself!

Dennis Cokely: My Memory of an Honored Friend and Colleague.

There are moments in time, the significance of which we miss because we are too young or naïve or inexperienced to see them for what they are. Years and experience throw a glaring light on those missed moments as if to highlight what could have been, what you could have done, if only you knew then what you know now.

Dennis Cokley’s passing this week takes me back to one of those, “if only I could turn back the clock,” occurrences. It happened at a lunch that I shared with him my first semester of law school.

Dennis loved teaching and learning moments, so to honor him I will share with you a story that I know would make Dennis chuckle… because that is exactly what he did when, a couple of years ago, he and I remembered together what happened at that lunch.

I first “met” Dennis in the mid-1990’s while I was working for the Utah Community Center for the Deaf. We were introduced when he came to teach some workshops in Utah. Over the years he and I talked and faxed (oh children this was back when email was science trying to prove it was not fiction).  He and I really got to know each other when I was accepted to law school at Northeastern University. I sent him a note and he responded that when I had settled in and found the time to come see him and he would take me to lunch.

A few months into my first semester I happened to have some time open and I wandered across campus to Dennis’ office to see if he was free. As I walked into the Deaf Studies Department he was walking out to go to lunch with a colleague, but he kindly invited me to join them. I told him I didn’t want to disrupt his lunch. Dennis gave me that smile (if you’ve ever met him you know the smile I mean) and signed, “we would welcome you to join us, I would love to introduce you.”

So I went.

Dennis introduced me to his colleague as “my friend from Utah.” Dennis went on to give “a proper Deaf introduction” to this hearing colleague and I realized that he knew things about my history and background that only a person who took an interest would know. His introduction was gracious and complementary in a way that can only be described as, “with the manners Dennis was known for.”

Then we ate. We ate and talked about Deaf culture, interpreting, law, policy, the past and the future. They asked my opinion. They listen to my input (I am cringing as I remember how much I thought I understood that day compared to how little I actually knew).

It was a very enjoyable lunch. But I admit, to my embarrassment, I did even begin to grasp the enviable position I was in that afternoon.

With the benefit of years and experience I now realize that I had a singular experience that day. I relive that afternoon and think of all the things I should have asked if only I had understood that for two and half hours I sat between two of the greatest minds in my field. For those brief two hours he gave me a place at the table, seated between Dennis Cokley and Harlan Lane.

Thank you Dennis. Your kindness equaled your intellect.

That is the greatest complement I think I could pay him.

Note from Aunt SuperTam: Real Talk with SuperTam

If you did not know it by now reading this blog, I married an incredible and profound person.

Many people have asked me to share the talk my wife gave at my son Harrison’s funeral.

PLEASE DON’T STOP READING! This is an uncomfortable topic, but we need to accept this discomfit because it is literally about life and death.

I am sharing only part of her longer remarks because it is vitally important. You can find the full transcript on my Facebook timeline.

I am happy that it touched so many people and hopefully opened up some much needed dialog on the topics of both mental illness and suicide.

Please remember that these are the words she spoke over my son’s coffin, in a room with about 600 people watching and listening. I say that not only as a kind of trigger warning, and as a way of letting you know the power and strength possible in the human spirit, but also to highlight the sacred nature of her words.

Please share this. Share her full remarks. Share them with people you love or people you just met, but share this message.

Excerpts of remarks given on July 28, 2018, at the funeral of Harrison T Boam by his mother Tammis R Boam.

“…Harrison asked me to say it like it is today. So, we are going to have what I’m calling Real Talk with SuperTam, (because that’s my nickname).

Harrison killed himself. Very few people want to say that. People don’t want to talk about it. People do want to talk about it but they don’t know how. It’s an unbearably painful topic. People keep telling Dale and myself that we are so brave to talk openly about what Harrison did. We never considered any other option. It didn’t feel brave to either one of us, just truthful. When a person dies of heart disease or cancer or pneumonia, we all grieve, but we don’t fear talking about why they died. Mental illness carries a heavy stigma in our society and I believe we share an obligation to have more productive and proactive conversations about a really scary and difficult topic. Mental illness is physical illness. It happens in the brain. Just like MS or Parkinson’s disease; it can be a chemical imbalance, a failure of synapses to connect properly, or an underdeveloped portion of the brain that limits its proper function. It is not different than any other illness. But it is sooo taboo. When the term ‘Mental Illness’ is mentioned, people think in extremes; severe debilitation, psychosis, the inability to work or leave the house, erratic behavior, frightening delusions – scary, scary words, yet mental illness usually doesn’t look like that. It’s depression – from mild to severe, anxiety, ADHD, OCD, Anorexia, Post Partum Depression, Autism Spectrum – it can be an illness or a disorder or a dysfunction. Everyone in this room knows someone who deals with a mental illness every single day. It is often silent and very subversive, and people can feel isolated or hopeless.

Nearly every single person that I talked to, or Dale, or my parents or in-laws or our friends knows someone who has had suicide effect their family. The heartbreaking thing is that suicide is on the rise amongst our youth. Our children are dying and we are afraid to talk about it because it is uncomfortable. It is uncomfortable for me to stand here today and talk about it.

But I am willing to open the conversation. I am willing to answer questions. I will listen to fears and pains, and I will try to offer comfort. I know I’m not the only one willing to do this, but I think one of the problems we collectively suffer from is fear.

Dale and I always try to teach our kids that the devil dwells in darkness and the gospel spreads light. So they should base their decisions on whether or not they have to hide what they do in darkness or if they can do it openly in the light. This is a good foundation for teaching decision-making. However, people often hide in darkness. Not because they are dark themselves, but because they are afraid. We need to learn how to recognize people who are hiding. We must practice seeing what people in pain look like. We need to commit to ourselves that we will be the person. The one who offers succor, in whatever form that takes. We need to ask questions and develop relationships that allow people to open up and be unafraid… The Lord is asking us to be is hands and help his children. We need to seek the one, and we also need to be the one. Be the one who looks. Be the one who asks. Be the one who sees. We have the power to heal.

Our family has been terribly, irrevocably wounded and changed. We are in agony. But we are being ministered to, every second of every day. Because of that, we are already beginning to heal. We have a long road ahead and we accept that, because we do not walk that road alone. The Savior walks that road with us. And so do every single one of you every time you do something that is motivated by love. The road that we walk, the same road you walk, is the path of the gospel. It guides us towards our Father in Heaven…

He did kill himself, but he also died because he suffered from an illness. We do not need to be ashamed of that or hide that fact. Harrison made a choice I wish he had not. He took an action he can’t take back. I know he would if he could. I know he didn’t mean to do this. But we are the ones who are left with the results of his actions. What do we do with that? Do we live within the atonement of Christ? Do we refuse to let fear keep us from speaking when speaking is necessary? Do we reach out, see a person, offer love and provide acceptance? Do we hide in the darkness, or do we shine in the light? I know what Harrison would have us do, and I know what the Lord would have us do.

Harrison, I’ll love you forever, I’ll like you for always, As long as I’m living my baby you’ll be.”

Thank You, and An Open Letter to Lin-Manuel Miranda

People keep coming to my door and telling me, “I don’t know what to say.” That is because there are no words. There is only love. It is only you that we needed. We needed you, and here you are.

I cannot express how completely my family and I have felt your love. Emails, texts, cards, calls, flowers, visits and food (so much food). Thank you, thank you, thank you.

So many people have shared with me their own stories of grief. I could never have anticipated how deeply comforting it is to hear these stories and to realize the teller is still breathing in and out, getting out of bed, going to work and the store each day. It will be possible to do the mundane and everyday tasks of life, I know that because others who have walked where I am walking are doing it. They told me their stories and so I know it’s possible.

I know I am just at the door of grieving and that it will sneak up on me in months and years ahead and take me out at the knees when I least expect it. But I also know I have a community around me ready to raise me up when I stumble.

Now.

I promise I will return this blog to the purpose for which it was intended, but you may have noticed I write when I am sad or angry or confused or happy or… you get it.

I wrote the following letter a couple of days after my son died and I have been asked to share it here. At the time I was sitting in the darkness and just felt compelled to write. After I sent it to Mr. Miranda’s Facebook page I wondered why I did it. Looking back I remember an episode of M*A*S*H where Dr. Sidney Freedman is writing letters to Sigmund Freud to help himself to understand his own feelings.

I’m not a psychiatrist. I’m a writer and a sometime actor. I don’t write to Dr. Freud. It appears I write to Lin-Manuel Miranda.

Dear Mr. Miranda,

I find myself writing to you in this strange public forum because it is the only place I can imagine right now to reach out to you. I could not find an address to send a letter or email.

I have no actual expectation that you will ever read these words, but, gratitude, like forgiveness, is much more for the giver than the receiver. Even if this never reaches you it is still vital for me to say it.

My 13-year-old daughter is a fan of your work, specifically Hamilton, to a point that can only be adequately described as “with the love and obsession possessed by a 13-year-old girl for a piece of art that speaks to her soul.” Thus I have had the opportunity to not only see your masterwork live when it toured through Salt Lake City, but before and after that inspiring performance to hear the soundtrack on an almost daily loop playing in my home and car.

I therefore became a fan as well.

I am compelled now to write you, to thank you for all your work, but specifically for the song It’s Quiet Uptown. That song has played, not in my home or car, but in my head since Tuesday of this week when my eldest son took his own life.

This was not an act which followed a long struggle with depression or crippling mental illness. It happened in a moment when all the ingredients for such a terrible event were present: anger, an argument and a gun. In a moment that he could not take back he let those three elements take him away from his wife, family, brothers, sister and his mother and I.

I was not there when it happened but that does not prevent me from screaming into the past and begging him to stop and breathe and think for just one more moment. That breath and thought will never happen and all I am left with when the screaming grief and tears of his mother and siblings and I fade, is quiet. Quiet in desperate search of peace.

Though it is quiet outside, in my mind I still beg to hold him. I beg to trade his life for mine. But I am left in the end with quiet-where I try to push away the unimaginable. Where I try to live with the unimaginable.

I am searching Mr. Miranda. Next to me is my wife, we are together walking through the unimaginable.

My gratitude to you is for giving me the words, your words, the ones you gave to Alexander Hamilton and to Eliza Hamilton, that you unknowingly gave to my wife and I as well. Those same words you gave to all who are pushing through the unimaginable.

Now I must find my quiet place, my uptown, where I can do the unimaginable and find that grace too powerful to name.

I know it’s there. Because you told a tale that is rooted in truth. Somewhere there is peace. Somewhere there is grace. But right now it seems unimaginable.

I know it is not impossible. I feel the grace of eternity fighting to find a place in my heart. The faith I learned in church from my childhood tells me there is a place of peace beyond this, though I can’t see it now.

The lyrics that, I can tell you, were whispered into your heart by a loving father in heaven, speak to so many people, too many people, who must find a quiet place to look into the void and learn to live with the unimaginable.

Thank you for listening to that still small voice Mr. Miranda. Thank you for following where that voice inside led you. Thank you for giving those words to all of us pushing through the unimaginable. I know it can’t just be me that needs them.

I felt such a great need to tell you that, to express my thanks knowing that you may never hear it. That you may not know I wrote this does not matter when it comes to gratitude. Gratitude must be expressed.

Our great love to you,

Dale H Boam and family

(Thank you for reading this. I’ll get back to the whole interpreting thing now.)