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!

4 thoughts on “What Is the Role of Parent/Guardians in Advocating for Adults with Disabilities?

  1. I was demeaned in the way you described by a parent or guardian. They said my “mental age” was that of a “seventeen-year-old”, but they still say that all these years later and I’m 32. I may not have intellectual disability, but to be compared with those people is very dehumanizing. Regarding the 14c stuff, I was half tempted to comment, but my thing is with 14c in place we disabled people would be forced into workshops if a meaningful career is unattainable by DVR standards. I want to produce and make music as a career, ut DVR in any state would scoff at me and say, “Here’s a dead end job with no promotion.” And I’m sure the developmentally disabled do take money seriously. Let them have better caregivers, I say. Because of so much abuse by caregivers, I wouldn’t trust my parents with a ten foot pole in a room at all. They have no desire to help me and support a career choice like being a social worker, or a case manager for disabled adults, or perhaps disabled children. Their sordid excuse is that I “don’t have the talent.” Bullshit, I say. Of course, DVR doesn’t believe I’m stable enough to do that, but again, I call bullshit. Because of this, now I have two choices: deal with 14c style work in a sheltered workshop that pays too little or nothing at all. Even SSI is below minimum wage per hour, but it’s better than someone stealing my earnings.

  2. This is a great midway analysis. Will you be posting a final analysis of the listening session results to see whether things changed over the course of the input period?

    1. Unfortunately, there were so many comments (nearly 2000) and no way to download all the comments at once (I had to literally go comment by comment) so I didn’t have the time to complete the analysis. It is possible that some trends might have changed. I am hoping that ODEP might release a final summary at some point. I also hope that ODEP will engage some other data collection processes like visiting workshops and interviewing workers in order to give us a fuller picture.

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