What Is the Role of Parent/Guardians in Advocating for Adults with Disabilities?

Last week, I shared the link to comment on Section 14c, the provision allowing employers to pay people with disabilities a “special wage” based on productivity instead of the federal minimum wage. Comments have been pouring in, and it is possible to read them all (though time-consuming). As I read the comments, I noticed a very interesting trend. Dozens of comments, in support of Section 14c, poured in from parents and other relatives of disabled people. Unsurprisingly, most of the comments from people managing sheltered workshops also supported the provision. On the other hand, many Comments opposing Section 14c came from people who self-identified as disabled. In fact, out of the 519 comments I’ve been able to code so far (I’m still trying to keep up-so this analysis is in progress), 90% of the comments from parent/guardians of disabled people were in support of 14c, but 67% of the comments from identified self-advocates were opposed to the provision. Furthermore, only 10% of the comments on the forum were from self-advocates, while 39% were from parent/guardians. The parent/guardian voice was nearly four times as loud as the self-advocate voice.

Regardless of where you stand on sheltered employment or subminimum wages, it is concerning to observe such a vast disconnect between the views of parent/guardians and the views of adults with disabilities. And it raises important questions regarding the appropriate role of parent/guardian voices in disability policymaking.

Another trend was even more concerning. After some of the self-advocates commented voicing their opposition to Section 14c, they were told by other commenters that if they were capable of typing on an online forum, they must not be “severely disabled” enough to be personally impacted by Section 14c. Thus, it was assumed that individuals who are personally affected by Section 14c are incapable of speaking for themselves, at least not on an online policy forum. The implication is that their views can be represented only through their family members or caseworkers. Notably, only people on the pro-14c side of the fence used this argument to dismiss their opponents. I didn’t see anyone on the anti-14c side dismissing their self-advocate peers who wanted to stay at sheltered workshops.

First of all, this assumption is not entirely accurate. Several individuals on *both sides* of the fence identified having intellectual/developmental disabilities (IDD) or otherwise having experience with subminimum wage employment. Secondly, autistic adults have warned of the dangers of using functioning labels to categorize disabled people. In short, like mental ages, functioning labels reduce a dynamic, complex person down to a single point on a line. People who can type articulately on their policy position may still have substantial support needs in the workplace. We may still be at a real risk of employment discrimination. And, those who are unable to type or who don’t have the resources to access an online forum may absolutely have important views to share about their employment options.

As frustrating as those comments were, they do raise an important point. Many disabled people cannot share their views on policies in the traditional means like online forums, writing or calling legislators, or going to busy town hall meetings. We must find creative ways to invite all people with disabilities, including those with significant support needs, to tell us how current policies affect their daily lives-for better and for worse.

So how should we treat parent/guardians claiming to speak on behalf of their loved ones with severe disabilities?

It is true that in research, sometimes caregivers can provide “proxy” data on behalf of an individual who cannot answer questions. For example, the Functional Independence Measure (FIM), which is a scale of how much assistance a disabled person needs for various activities of daily living, can be filled out by a caregiver or by the individual. Such a measurement is relatively objective and straightforward. On the other hand, having proxies report on subjective mood states or overall quality of life can introduce significant bias to the data.

Unfortunately, there’s another problem with having parent/guardians represent the views of people with IDD. Historically, people with IDD have suffered high rates of abuse by caregivers. Tragically, it is estimated that one disabled person is killed by a caregiver almost every week. While the vast majority of parent/guardians genuinely have the best interests of their loved ones at heart, and would report accurately on their preferences, we cannot take this for granted, given the prevalence of abuse. On a related point, caregivers who experience burnout may have a self-interest in supporting particular policies that reduce their caregiving burden. Reducing caregiver burden is an important goal, but it shouldn’t trump the rights and happiness of those who require caregiving.

Having said all this, I do believe that parent/guardian perspectives should be included in policymaking. Their voices just shouldn’t drown out the voices of those who are personally affected by the policy. And, parent/guardians can assist their loved ones to share their experiences. For example, parent/guardians can provide historical background on their loved one’s life, which a researcher can use to help scaffold questions and build rapport with the interviewee. Parent/guardians can advocate for their loved ones to receive self-advocacy training and augmentative/alternative communication equipment. They can help their loved ones find written or spoken language to express their views, and appropriate advocacy outlets. They can join self-advocacy organizations alongside their loved ones and bring them to meetings and rallies, or assist them with letter-writing, if those modes of advocacy are accessible to the individual.

But, what about those “severely disabled” folks who don’t have a reliable mode of verbal communication? Well, everybody communicates. For some, the only or the most accessible way they communicate is through behavior and body language. Parent/guardians can provide background information on these folks’ lives, but they shouldn’t be the only voices speaking for them. In my opinion, examining how “nonverbal” individuals feel about a policy or program might be best done using ethnographic or case-study research. To find out how individuals feel about working in a sheltered workshop, we might ask their parent/guardians, their employer, their coworkers, but we would also want to observe them in multiple settings-in the workshop, in their home or residence, etc. Find out what their nonverbal signals of joy, frustration, fear, sadness are and see in what environments those emotions are displayed. We can ask the individual questions to signal our interest in what they have to say, even if they only respond nonverbally.

Before I conclude, I need to mention one more thing. As I scrolled through the online dialogue about Section 14c, I saw many parent/guardians using insulting language to describe their loved ones with IDD. For example, statements like “my son/daughter will never live a normal life.” In several posts the R-word was used instead of the modern term “intellectual disability.” One parent was trying to argue that adults with IDD don’t care how much money they make. The parent wrote, “Try asking a two-year-old the difference between a nickel and a dime” and later the parent defended their comment by saying their adult daughter had “the social skills of a 3-year-old.” Another parent said “when my son doesn’t have something to do during the day, he shows more autism tendencies.” (Seriously? “Autism tendencies” is a bad thing? I wonder if my “blind tendencies” come out when I’m bored-and is that a bad thing)? This isn’t just a matter of being politically correct. It’s about how actual people with IDD have eloquently described the problems with using the R-word, mental age statements, and equating autism with something bad. If parent/guardians (or anyone, really, but especially people who don’t have disabilities themselves) are going to get involved in disability advocacy, they really should educate themselves on what language and talking points humanize, rather than demean, the people they are trying to protect. It is possible to argue that a program is necessary, and to state that a loved one has specific needs, without demeaning that loved one with ableist slurs or comparisons to a toddler. Gains for the disability community should never come on the back of ableism. If you find yourself using demeaning or pity-based arguments to defend a policy, think again about how that same argument can be framed in a way that respects and humanizes disabled people.

Want to comment on Section 14c? Comments are open for one more week!

Fair Wages for Disabled Americans: It’s Time to Speak Up!

If you’re employed, think about how productive you are at your job on a typical day. Then think about all the things that might affect your productivity from week to week, or day to day. Do you sometimes have super productive days where you can feel your to-do list shrinking? But then, you might spend a whole afternoon staring at your computer screen, stuck in writer’s block. Or, maybe you’re less productive when you haven’t gotten enough sleep, or you’re worried about a family issue, or there’s distracting construction noise. Or, if you work in sales or customer service, there are busy days and slow days.

Now, imagine that your boss randomly gives you a pop quiz. During a random hour on a random day, your productivity is measured. And then, your salary is set based on your performance during that random quiz, and once your salary is set, you can’t appeal or change it. So, if you’re tested on a slow day, or when you’re distracted, or have nothing to work on, you end up with a low salary as long as you stay in that job.

Now, one more thing. Imagine you aren’t subjected to the minimum wage. So, if your productivity is very low during that pop quiz, you might end up being paid far less than the minimum wage. Until the day you quit.

The idea of tying wages to a single “productivity” measurement seems ridiculous to those of us who have always known a minimum wage. But, it’s still a reality for some Americans with disabilities. And it’s still entirely legal.

The federal minimum wage was set up via the Fair Labor Standards Act (FLSA) in 1938. A section of that law, Section 14(c), makes an exception for employees with disabilities. Disabled workers can be paid “special wages!” (note that word special again). The Department of Labor can give 14(c) certificates to “sheltered employment” providers, organizations that hire exclusively disabled workers, usually performing menial tasks. Once an employer has an approved 14(c) certificate, if they determine that an employee is less “productive” than a typical nondisabled employee, the disabled employee can legally be paid a “subminimum” wage dependent on how well they perform on a timed productivity test, compared to a nondisabled employee. Reportedly, in extreme cases, individuals have been paid mere cents per hour.

Think again about all the factors that might hamper your productivity at work? For a disabled employee, there are many more artificial barriers that could lower productivity. One of the biggest is a poor job-person fit. A worker who hates making widgets is going to be slower doing that than doing something they love. If you ask me to sort clothing by size, and I can’t read the print labels, I’m going to be slower than a sighted worker at that specific task. But does that mean I’m worth less? That I bring less value to the workforce as a whole?

The provision of 14(c), like so many other aspects of the disability system, treats a person’s productivity as a constant. It ignores the influences of the environment and supports that could raise the productivity ceiling. And by tying productivity to earning potential, the provision also treats our worth, our value to the employer, as a constant constrained by disability.

The Department of Labor is currently taking public comments on Section 14(c) subminimum wages. Looking at the comments, the provision still has some strong supporters. Not surprisingly, the most vocal defenders of Section 14(c) are either family members of developmentally disabled adults or people who work for organizations holding 14(c) certificates. Meanwhile, the provision is strongly opposed by disability self-advocacy orgs made up of actually-disabled people.

The pro-14(c) argument goes something like this: “My relative is significantly disabled with high support needs. They can’t do X or Y, so they can’t hold a job in the competitive market. They love their job with Z agency, which has a 14(c) certificate. They like being paid, but they don’t really care how much they make. If the 14(c) exemption went away and Z agency was forced to pay minimum wage to all its workers, my relative would be out of a job and just sitting on the couch all day.”

I’d like to examine two aspects of this argument: first, the idea that sheltered employers would all be forced to shut down if they had to pay minimum wage, and second, the idea that so many people can’t hold jobs in the community.

First, there’s this fear that if disabled workers all had to earn minimum wage, their employers wouldn’t be able to afford it. While it’s impossible to know exactly how much every sheltered employer can afford to pay its workers, nonprofit agencies are required to report the salary they pay their CEOs, which can give us some sense of their overall cash flow. Currently, 19 local Goodwill affiliates hold active 14(c) certificates and pay at least one of their workers subminimum wage. Yet Goodwill, in general, pays its CEOs quite generously: in 2014, 23 Goodwill affiliates paid their CEOs at least $400,000, significantly higher than other social service charities. Notably, Goodwills receive revenue from their retail operations as well as private donations and government grants. If an agency can pay its CEO an above-average salary, certainly it can figure out how to redistribute some of its revenue toward paying fair wages.

Second, there seems to be this idea that it’s either all or nothing. Either we give disabled workers sheltered jobs with all the supports they need, but we have to pay them subminimum wages, or we just turn them out to the mainstream job market to fend for themselves without supports. Such a dichotomy is far from true. In fact, many models of supported employment exist to assist all potential workers with  Job training, placement, and support on-the-job. And evidence is mounting to demonstrate that people once thought “unemployable” can succeed in jobs alongside their nondisabled peers, paying an equal wage.

For example, the Project Search program offers on-the-job training and job-seeking supports to high school seniors with disabilities. A related program, Project Search-ASD, includes supports and training specifically tailored to the challenges experienced by autistic youth. In a recent investigation, 79 youth in Virginia enrolled in Project Search-ASD during their final year of high school. The participants were all in self-contained classes with significant support needs related to autism and, often, other co-occurring medical conditions as well. During the program, the participants received on-the-job instruction while rotating through three internships. This training was supplemented with individualized job coaching and a plan to assist the youth in finding a job after graduation and receiving appropriate supports on-the-job. One year after graduation, out of the 73 youth who completed the program, 58 of them had jobs in their communities, working an average of about 20 hours per week, and all making at least $7.25 per hour (averaging around $10 per hour). The impossible becomes possible, not just for a few exceptional “high-functioning” individuals, but for a majority of youth with substantial support needs who received the right combination of supports at a critical time in life.

I can agree with the pro-14(c) commenters on one thing: Work is important to many (though not all) adults with significant disabilities. But, I believe that doing a task and getting a dollar an hour is not work. It’s glorified volunteering. And certainly, if an individual is being fed, clothed and sheltered through other means (like Social Security or family support), that individual may be perfectly content as a full-time volunteer. But, let’s call it what it is: it’s volunteering, maybe vocational training (if there’s a clear goal of transition to an actually-paying job). But getting a dollar an hour or less is not employment in my opinion.

The pro-14(c) people say it’s all about choice. And I support that. I support *informed* choice and self-determination for individuals with significant disabilities. I support having non-work social and recreational programs for individuals who want to spend time with their fellow disabled peers. I support having a range of employment options. I might even support having a few self-contained employment options where people are doing meaningful work alongside their disabled peers, with built-in supports. All I ask is that disabled workers get the same basic standard of fair treatment at work as their nondisabled counterparts: a job matched to their strengths, opportunities for professional growth, safe and sanitary working conditions. And, in 2019, let’s pay them the damn minimum wage.

Want to get involved? Comment here on the importance of fair wages. Let’s drown out the shouts of all the doubters who are so convinced of their disabled relatives’ limited potential. Let’s proclaim our hope and commitment to civil rights and self-determination for our disabled brethren.

After you comment, ask your legislators to support the Transformation to Competitive Employment Act which would phase out Section 14(c) while helping states increase job supports for disabled workers in the community.

What My Grandfather and His Dog Taught Me About the Fallibility of “Can’t”

I was recently gifted with some old family home videos. Watching them triggered a flood of memories of my grandparents. And I can’t think about my grandpa Dave without being reminded of one strange conversation that lives in infamy inside my mind.

My paternal grandparents, Ina and Dave, lived just a few miles from us, and they provided a lot of childcare for my sister and me. We spent many after-schools and weekends at their home. I often recall my sister being in the TV room with Grandma, while Grandpa and I would sit on the couch in the living room and argue about life.

Grandpa was smart as a whip, caring in his way, but stubborn. He held his convictions tightly. And I-well, I was insatiably curious, highly logical, and some might have called me “feisty” as a child. It took a while for my emotional and practical intelligence to catch up to my book-smarts. And, as you will see in a moment, I took things very literally.

So, Grandpa and I would debate about everything. We went back and forth, but he would always win. He had literally ten times as much life experience as I did, and far surpassed me in verbal reasoning skills. Plus, he held clear authority in our relationship. Regardless of who was right and who was wrong, only one of us could play the “go to your room” card, and it wasn’t me.

So, he always beat me. Except this one time.

It was such a significant life event for me, I remember the date: September 16, 1992. A Wednesday just after I had started the second grade. On this Wednesday afternoon my sister and Grandma were otherwise engaged, and I was on the couch happily cuddled up with my grandparents’ little Yorkie/shih tzu dog, Archie.

For the life of me, I don’t recall how Grandpa and I got on this topic. But, I vividly recall him telling me that “dogs can lick people, but people *can’t* lick dogs.”

I insisted this was untrue. Because, technically, people *can* lick dogs! I explained that humans and dogs both have tongues, and if a human has a tongue, she definitely *can* lick a dog.

Grandpa’s rebuttal was biblical. God created animals and humans separately, he said. God intended for humans to have dominion over animals. Animals and humans are different, so even though animals can lick us, we *can’t* lick them. God said so.

I figured out what I had to do. Believe me, I really didn’t want to do it, because I knew where Archie had been playing out in the yard. And I was terrified of the repercussions for openly defying Grandpa. But, I knew I was right. People *can* lick dogs, darn it. I needed to beat him, just this one time.

So, silently, I leaned down to Archie on the couch. I stuck out my tongue just far enough, and I licked him. For those who want to know, he tasted-well, about how you’d expect.

And then I sat up and braced myself for the scolding, or disciplinary action that would inevitably follow my sassiness. And….Nothing happened. After an agonizing moment of silence, Grandpa changed the subject. Surely, I thought, I’d hear about it later from Mom and Dad. But no, we had a nice dinner that night, with no mention of my unhygienic adventure.

There are several explanations for my victory. Perhaps Grandpa just didn’t see me do it. Perhaps he did, but decided to just let it go. But, I choose to believe that the incident taught both of us a lesson in the fallibility of “can’t.”

A “can’t” statement is like a scientific hypothesis. It is very hard to prove, but very easy to falsify. All it takes is one counterexample, one demonstration of ability, one silly little girl licking a puppy on the couch, to prove that something is possible. That something might be difficult, it might only be possible under certain conditions, it may not always be desirable, it might go against commonly accepted conventions. But, technically, if one person does something, it “can” be done.

The disability world is dominated by “can’t” statements. And some of them are valid. No matter how hard I try, I can’t read the writing on your T-shirt or tell you what color it is. Some people truly cannot walk, speak, hear, or breathe without assistance. Or they can do these things only with great effort or expense.

But then there are so many other “can’ts” that are unnecessarily placed in our way by outsiders. Sometimes, people insist we “can’t” because they’ve never seen a disabled person succeed at the thing, or they lack the imagination to consider how the thing could be done. Others create artificial barriers-physical, environmental, attitudinal, or policy barriers-making our participation in certain activities impossible. Still others simply don’t want to depart from how things have always been done-which, to me, is similar to the biblical argument “because God said so.”

We need to question the “can’ts” leveled at us. We need to examine where they come from, and what factors could turn them into “can” possibilities. We need to not just accept what authorities tell us.

Let’s consider the common statement about how blind people “can’t” drive automobiles. Technically, I “can” drive a car. I did it once in an empty parking lot with a ton of verbal guidance from my dad. Could I drive a car on the highway without crashing? Maybe, but I’m not going to test that hypothesis. Based on how much sighted drivers rely on vision to gauge their position relative to other drivers, I think there is fairly strong evidence that my driving on the highway could be dangerous.

But what I can do is examine what conditions would need to be present to overturn the “can’t.” What would allow a blind person to drive on the highway? In fact, blind people have been asking these questions for a while now. The National Federation of the Blind has developed some ideas of technology that could enable a blind person to drive. Now that autonomous vehicles show some promise, we are in discussions to ensure that such vehicles will be fully accessible to drivers with disabilities.

When I reflect on that long-ago moment with Grandpa and Archie, I think about the experience of all those who committed civil disobedience to fight for the rights I have today as a disabled American. Those people had far more to fear than a time-out from Grandpa. Some of them went to jail, or risked doing so, to guarantee that disabled people could access public spaces. The act of civil disobedience is risky, messy, and uncertain. But when we know we are on the right side of justice, sometimes it’s worth it. In our movement today, we cannot become complacent. We must rely on the younger generations to question what may seem to us like long-accepted truths. Our quest for equality depends on the agitators, or as Grandpa would say, the “smart-alecs” among us. I didn’t like being called a “smart-alec” at the age of seven, but today it’s a label I carry with pride.

There’s one more layer to this story. Grandpa was a disabled man. He had chronic arthritis from age 17 on. He was also the son of Lithuanian immigrants, growing up during the Great Depression, and the first of his family to go to college. Grandpa found a successful career as an accountant that made use of his brain instead of his legs. But, undoubtedly, he was subjected to many “can’ts” throughout his life. Some he overcame, but others persisted. Likely, he was told he “couldn’t” do things that my generation takes for granted. My defiance of authority is a privilege that Grandpa didn’t have in his youth. I wonder what “can’ts” I accept as fact today, that will seem ridiculous when I reach my 70s.

Grandpa died just before I started middle school. I have often wondered what it would be like to have an adult conversation with him. I wonder if he will like my spouse, or approve of my career. I don’t know these things, but I am grateful for the intellectual sparring matches we had in my childhood. I am glad he took the time to engage my mind. And I hope I can use it to make him proud.

Rethinking Disability: The Social Model of Disability and Chronic Disease [Repost]

“We should not, however, lose sight of the fact that people living with impairments can experience negative effects tied more directly to their bodily conditions. People with impairments that involve, for example, fatigue, pain, depression, or chronic illness may want both to overcome social barriers and discrimination that oppress all people with disabilities, and to voice their desire to remove or address the troubling accompaniments of their impairments, through medical or other means.”

“I want to have more energy and less pain, and to have a more predictable body; about that there is no ambivalence….Yet I cannot wish that I had never contracted ME, because it has made me a different person, a person that I am glad to be, would not want to have missed being, and could not imagine relinquishing, even if I were ‘cured.’ … I would joyfully accept a cure, but I do not need one.”

“Some conditions of the body may be inseparable from physiological suffering (e.g., living with chronic pain or nausea), but the ways of life that people form within them may be quite valuable, and the suffering they experience may play some significant constituent role in what brings the value.”

“There are, I think, many versions of disability pride.”

A central principle of Disability Wisdom is the idea that impairments are not always negative for everyone all the time. In fact, when I give training presentations, I often start by distinguishing between impairment and disability. “Impairment” is a physical or mental difference, while “disability” is the disadvantage that can occur when attitudes or environments are incompatible with that difference. This concept is often known in academic circles as the “social model” of disability.

However, as this excellent article points out, sometimes a pure social model doesn’t fully capture people’s experience with impairments. This may be especially true for medical conditions that cause inherently unpleasant symptoms (such as pain, nausea, or depression); conditions that get progressively worse or vary over time; or conditions that threaten life expectancy. For these types of impairments, people may genuinely suffer and they may desire medical treatment. But, at the same time, people might still place some positive value on having the condition. This article urges medical professionals and disability scholars to take a more nuanced view of impairment, disability, and chronic disease.

Rethinking disability: The social model of disability and chronic disease

I Can Pee Out of My Belly! [Repost]

“Anyone who knows me can tell you that in my world, ‘let’s share a fun fact!’ is roughly equivalent to ‘let’s take a field trip to hell on a paratransit bus!’ Oh, wait. That’s redundant.”

“Well, friends, before you die just thinking about fun fact circles, today I am sharing a fun fact about myself that I think is pretty neat: I can pee out of my belly!”

“The Mitrofanoff procedure, in a nutshell, involves the creation of a channel between the bladder and the surface of my skin. The channel is created using an unlikely hero, the appendix, which has been repurposed from uncool, rejected vestige organ to nifty pee tunnel.”

“In short, due to my disability, I can’t transfer to the toilet independently. That means a lot of waiting around and wiggling while waiting for an assistant, a lot of pee anxiety, and about 43213421 people seeing me sans pants.”

“I have neurogenic bladder, meaning that my brain and bladder are basically drunk texting each other.”

“In my case, I did not need an augmentation, because as the urologist put so eloquently, ‘you have a really big bladder.’ I’ll be adding this special trait to my resumé, as I’m sure it is prized by employers worldwide.”

“You find out who your people are when you’re peeing your sheets and receiving emails from the chuck sheet company encouraging you to take a quiz about which color diaper matches your personality (yes, really…and I know you were curious, so, purple!)”

“But it feels indescribably good to have more freedom (peedom?) and privacy as I navigate life on wheels.”

This week on the Weekly Wisdom blog, I’m sharing this humorous piece from Kathleen Downes. Ms. Downes blogs about her life in a “squeaky purple wheelchair.” She shares her experience having a Mitrofanoff procedure to increase her independence in toileting.

I Can Pee Out of My Belly!