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“We thrive on comparison. And we trade in its marketplace with the currency of human dignity… Our worth is inherent. And never, ever subject to comparison.” – Diary of a Mom

I’ve had at least two people tell me they were glad they weren’t blind, and then describe their own misfortunes. One guy said he was receiving dialysis treatments for his failing kidneys. The other disclosed that he was homeless.

As a needle-phobe, I can’t imagine anything about my own life being worse than having to get my blood filtered through a machine. Nor can I imagine my daily struggles rivaling the absence of a warm bed each night.

But that is the nature of comparisons. The criteria for “better” and “worse” are defined by the one making them. We tend to view familiar challenges as less “bad” than unfamiliar ones. And, we have a psychological need to see ourselves as being on top.

People engage in “social comparisons” all the time. Doing so can serve several functions. We might use “upward comparisons” to measure ourselves against the admired achievements of older siblings, mentors, or celebrities. In this way, upward comparisons can spur growth. “Downward comparisons,” on the other hand, are comparisons we make to those we perceive as worse off, or less competent. These downward comparisons help us protect our self-esteem from threats.

Social comparisons are rampant in the disability community. We readily compare upward to nondisabled peers, or to our former nondisabled selves. We face the daily self-esteem threats of being put down by nondisabled people who express superiority and gratitude that they are not like us. And, naturally, the temptation is to compare downward to others whose disabilities seem worse than our own.

I know this, because I used to do it quite openly. And I still probably do, to an extent.

As a child in public school, I knew that I was terrible at sports and drawing. I felt inadequate because of the many areas in which my sighted peers seemed to beat me. But, I also discovered that I was good at academics. After being labeled “gifted” in the third grade, and tracked into the “Program for the Academically and Cognitively Talented,” I relished my skill in reading and math. While some of my peers competed in sports, I competed in spelling bees and the “Battle of the Books.” And, along with the heightened value I placed on academic success, I came to perceive those who were less academically skilled as less able.

In the sixth grade, a small group of students came into my advanced language arts class. They were not in the rest of my classes, and they were accompanied by another teacher, probably a reading specialist. One day, I recall asking their teacher, in an arrogant tone, why “those kids” were in my class. The teacher told me that was a mean question to ask. She added, “How would you feel if somebody didn’t want you in their class?”

I didn’t get it at the time. But, today, I recognize my error. I didn’t know those kids well. They may not have been able to read as fluently as I could. But I’d bet any of them could have kicked my butt in a game of basketball. More importantly, though, they deserved to be in the same class as I was. Their learning disabilities had nothing to do with their worth.

At the time of my conversation with the reading teacher, though, I vaguely recall feeling isolated. I think it was during some kind of class social activity, where my blindness was seen as a liability. So, I protected my self-esteem by putting other people down whom I perceived as more “disabled” than I was.

These kinds of comparisons have divided the disabled community. As my opening quote illustrates, people with intellectual or psychiatric disabilities have been judged as less worthy, less deserving of civil rights than those with physical or sensory disabilities. People from the latter groups may celebrate the fact that they don’t belong to one of the former groups, and use that absence of stigma as a reason to argue that they are worthy of inclusion. I also see this kind of social comparison within impairment groups. For example, a blind person who has developed strong coping skills may put down a blind brother or sister whom they perceive as “sheltered” or not “independent” enough. These comparisons prevent impairment groups from collaborating toward common goals, and they prevent some people from being fully accepted within their own impairment group, particularly if they have multiple impairments.

For these reasons, I struggled to identify with cross-disability communities. I always felt I had little in common with those who had learning or intellectual disabilities. At the same time, when I attended cross-impairment events, I felt that others looked down on my disability. Though blind people enjoy privilege within the disability world, we are also “low-incidence,” rare within the community.

It wasn’t until a few years ago, when I started meeting and reading the writings of other disabled people with different impairments, that I began to recognize some of our common experiences. And I realized that comparing myself to others with different impairment experiences was pointless and counterproductive. I can appreciate my own strengths and weaknesses without using them to put down others, or conversely, to burden myself to meet an artificially high standard.

The man with the kidney issue, and the homeless man, are neither better nor worse off than I am. They can do some things I cannot, and they likely have some days that are better than mine. They also have challenges I can’t imagine. Despite our differences, they probably share many commonalities with me, too. Comparing our lives is comparing apples to oranges.

This Thanksgiving season, let’s appreciate what we have, without comparing ourselves to those who don’t have what we have. And let’s appreciate what we have, without comparing ourselves to those who have things we lack. Above all, let’s acknowledge that despite the hand life has dealt each of us, and despite what we have achieved or not achieved, we all have the same inherent worth as human beings.

When strangers first discover that I am blind, one of the first questions they often ask is “How much can you see?” or “So can you see anything at all?”

On the other hand, some people assume that if you self-identify as blind, you must be “totally blind.” These are the folks who accuse the blind person of “faking” if they use a cane, yet can see to move around a silent obstacle.

Most disabilities can be classified into some sort of severity ranking. We tend to be fond of subclassifying people, first by type of disability, and then by (perceived) severity. So, many neurological disabilities are graded into mild, moderate and severe. People with physical disabilities might be labeled according to their degree of motor impairment. People with impaired vision get classified according to the amount of functional vision that remains. And so on.

These severity labels are common in medical and educational settings. But they have several problems. The problems with “functioning labels” have been emphasized in the autistic community, and many of the issues autistics point out about functioning labels can also pertain to other disability groups. Specifically, severity labels can be problematic if they:

• Oversimplify: Disabilities are rarely one-dimensional, but instead have multiple dimensions which may or may not be correlated. For example, autistic people can experience varying levels of impairment in social communication, motor planning, and sensory processing areas. Someone could be severely impaired in one area but mildly impaired or unimpaired in others, or equally impaired in all areas. So, the autism spectrum has been described as more like a color spectrum than like a brightness spectrum. Similarly, intellectual disabilities often cover two dimensions, “intellectual functioning” and “adaptive skills.” Someone with a visual impairment may have great visual acuity, but a very narrow visual field, or vice versa. Severity labels often oversimplify by treating a disability as a single construct.
• Are treated as constants: The impact of disabilities can change from setting to setting, day to day, or year to year. Someone may be highly disabled in one setting but only mildly disabled in another. People might have episodic flare-ups in symptoms or periods of remission. Severity labels ignore these nuances.
• Used to deny support needs: Assistive devices and supports can benefit many people with disabilities regardless of severity. However, because such devices and supports are scarce, they tend to be given only to people deemed as having the most severe impairments. For example, braille literacy can benefit people who are physically able to read print but cannot do so efficiently or comfortably, yet many school systems only offer braille to children who cannot read print at all. On the other hand, some supports may be denied to people labeled as too “severe” to benefit, such as augmentative and alternative communication (AAC) devices.
• Used to rank people’s human rights: Too often, people with more “severe” disabilities are treated with less dignity or respect than people with “milder” disabilities. This may happen consciously or unconsciously. For example, a parent may overshare details about the life of a child with “severe” autism and justify it by stating that their child would not understand the privacy violation. In other circles, people with milder visual impairments may be asked to guide or “help” those with total blindness, in a paternalistic way
• Used to make assumptions about quality of life: People with more severe disabilities do not necessarily have worse quality of life than people with milder disabilities. In fact, people with milder disabilities may face unique struggles for identity, acceptance, and support that people with more severe disabilities get automatically from disability communities.

So, should we keep classifying people according to the severity of their disability?

As someone with “severe” blindness, I wouldn’t mind just calling all legally blind people blind, or all autistic people autistic, and doing away with the focus on severity. I recognize that descriptors like “blind,” “Deaf,” and “autistic” carry positive cultural connotations and that people benefit from being considered part of these groups, regardless of how severe their disability is.

But, some people would argue that dropping severity labels altogether is itself an oversimplification, or an erasure of parts of the disability experience. Some people choose to call themselves “visually impaired” because they consider their experience with useful low vision qualitatively different from the experience of a “blind” person.

As with the debate over person-first vs. identity-first language, it is important to adopt the language preferred by the individual. However, there are a few lessons to be learned about severity labels in general. These include:

• Instead of asking about severity, ask about support needs. For example, instead of asking “How much can you see?” ask, “Are you a braille user?” or “Would high contrast help you navigate?” Don’t ask if an autistic person is “high-functioning” or “severe” but you can ask if the person prefers to communicate by speaking, typing or sign (or a combination depending on the setting).
• Recognize that supports typically meant for people with more severe disabilities can also benefit people with milder disabilities. People who can walk short distances might use a wheelchair for longer distances. People who have some residual hearing might still sign, and people who can navigate familiar environments visually might still use a cane in unfamiliar environments, at night, or when they want to easily disclose blindness to others.
• Above all, recognize that a person’s worth and potential for happiness is not defined by a severity label.

“I am 2. I am not terrible…I am frustrated. I am nervous, stressed out, overwhelmed, and confused. I need a hug.”

A post crossed my Facebook feed this week, written from the perspective of a 2-year-old (I’ll link to it at the end of this post). It describes the frustration and confusion of, on one hand, being prevented from doing simple things independently, while on the other, being expected to know how to do more advanced things like sharing, regulating emotions, and picking up one’s toys.

And while most 2-year-olds will eventually outgrow such treatment, disabled people often spend years or decades dealing with authority figures who infantilize us in some ways, while expecting too much of us in others. They may tell us we need to be more “independent” but seize control if they think we are doing something the “wrong” way. Without wise people in our lives, we may never be able to get out of the classic 2-year-old mindset.

There’s a thing that happens sometimes, and it happens not only with toddlers and their caregivers, but in all kinds of authority-ranking relationships. And, it happens to both disabled and nondisabled people, but tends to happen more often when the subordinate is disabled. In this illustration, I will use the generic example of a teacher and a student as a common example, but this is something that plays out in all kinds of authority-based relationships:

1. Demand: Teacher gives student a demand that the student either cannot, or really does not want to, meet. It might be a demand to participate with the rest of the class in something. It might be a demand to stop a behavior, like Quiet hands! It might be a demand to relinquish control, like imposing hand-over-hand “assistance” on a student. Whatever it is, the student is stressed by the demand.
2. Stress response: The student cannot comply, or really does not want to, and becomes stressed. With the aid of stress hormones, the student experiences a classic Fight, Flight, or Freeze behavioral response. They might fight (say no, push teacher’s hand away, throw something); or they might flee (run away); or they might freeze (flop down, cry).
3. Counter-response: The teacher is stressed out by the student’s behavior. This was not expected and it disrupts their lesson plan. Depending on how the student responded, the teacher might feel scared, frustrated, angered or upset. All too often, they react by doubling down on the demand, repeating it more forcefully and often adding more demands: “Don’t talk to me like that!” “Stop crying!” etc. Consciously or not, they might use responses like yelling, intimidation, shaming, threats or punishments in order to regain control and force compliance.
4. Escalation: Steps 2 and 3 repeat until one or both people break down. Too often, these situations end with consequences like restraint and seclusion of students or even injury or death, as in the tragic case of Ethan Saylor, a young man with Down syndrome who was killed by off-duty police officers in 2013.

This pattern is very common, but especially so when the subordinate in the relationship has a disability. Disabilities can make it more difficult to meet a variety of everyday demands. Individuals may have trouble processing requests or getting our bodies to cooperate. We may have a narrower range of accessible, preferred activities, so being pulled out of a preferred activity can feel disruptive. We may have sensory needs to do certain things or to avoid doing other things, which may not make sense to the people making demands. Or, we may be presumed incompetent and never given the chance to discover or show what we can do. Over time, we may develop a deep sense of learned helplessness.

What is the antidote to these cycles? Some people assume that the answer we are advocating is to just get rid of demands altogether, let little children do whatever they want and dispense with boundaries. That is absolutely not the case. Instead, what comes to mind are the concepts of respect and responsiveness. authority figures can engage a variation of the Stop, Ask, Listen philosophy:

1. Stop. Truthfully, most things can wait a minute. If you make a request and encounter resistance, take a step back instead of another step forward. If it’s a situation that truly can’t wait, where there is imminent danger, take control momentarily and then take a step back.
2. Ask. Pause and ask the person why they are struggling to meet the demand. Perhaps they don’t need help with something you are trying to help with. Perhaps they don’t understand your expectations. Perhaps there is something in the environment that is stressing them. Of course, some people will be more able than others to communicate what is wrong. If someone (like a toddler) can’t explain it, pay attention to the types of situations and demands that tend to cause upset and try to figure out what is the common factor.
3. Listen. Acknowledge the person’s feelings and make adjustments to help the person meet expectations. If a demand cannot be changed, provide choices and alternatives whenever possible.

While I don’t have much experience working with 2-year-olds, I have been working with teenagers who have very similar needs for autonomy and validation. Teens are often stereotyped as “not listening” to authorities, but it is evident how often their complex feelings and concerns are ignored. I am learning that if I take a few moments to nonjudgmentally listen to a student’s concerns, validate them, and help them find a solution without taking over the process, the student is happier. But more important than that, the student comes to respect me and is more willing and able to meet expectations. The student progresses toward their goals and my life is easier in the long run. So it’s a win for all.

Another aspect of “listening” is observing without immediately stepping in. When walking behind a student or watching them try a new task, I can be present to encourage, support and advise, without taking control. The student learns by doing, and they can control the level and type of support they get. Yes this takes patience, but the end result is well worth it.

Of course nobody is perfect. There are times when we can all slip up on this. (For example, there have been times when I’ve shouted “Let’s go!” to a student who struggles with transitions). I mess it up sometimes, but I’ve tried to be more aware of my own stress responses, as a cue that I’m not being as patient and present as I should be. I reflect back on the cues in the situation I might have missed, and how I can respond differently in the future. But when we get the “stop, ask, listen” drill right, the reward is apparent in the connections we build, and the goals we reach alongside those working under our authority.

Check out this post from the diary of a 2-year-old

Alongside my work at Disability Wisdom Consulting, I serve as the Deputy Coordinator for a youth program in Virginia called Project RISE (Resilience, Independence, Self-advocacy, Employment). We serve legally blind students between the ages of 14 and 21. I’ve written about this program here and here. As we approach two years in operation, I wanted to share some reflections on my role in the program, and how our program is unique from others out there.

Last year, we served 35 students living in 14 Virginia cities and surrounding areas. Our program has three major components. First, we hold monthly Saturday meetings in northern Virginia for students to engage in activities with local blind adult mentors. Second, approximately every 3 months, we bring students from across the state to weekend seminars which usually include students and mentors from other parts of the country as well. Third, we arrange individualized career development opportunities for students between sessions and during the summer, like informational interviews with professionals, job shadows, career interest assessments, and summer jobs or internships.

Project RISE is funded as a Pre-Employment Transition Services (pre-ETS) program, meaning we deliver our services using federal funds that have been set aside to help teens with disabilities prepare for employment. As such, many of our sessions focus on career-related skills suchas resume writing, interviewing, and professional networking. But pre-ETS also covers the array of “soft skills” that young people need in order to transition from high school to college and employment. We incorporate fun activities in the community that challenge students to advocate for themselves, build a strong sense of self and acceptance of disability, and learn the techniques to overcome disability-related barriers. Last year our agendas included ceramic painting; visiting a town festival; candle making; baking and grilling lessons; rock climbing; bowling; trips to a mall and movie theater; and meals out at restaurants in the community.

As the Deputy Coordinator for this program, I wear several hats, but perhaps my favorite role is that of a kind of hospitality manager to ensure the students are welcomed and comfortable. I coordinate transportation so that students living in outlying areas can attend our meetings. I send out group and individual communications so all our students and parents know what we are doing and have their questions answered. I am often the one to book meeting spaces and ensure that our meals and activities are set-up and paid for in advance.

When we go out for meals, we give our students and staff a cash allowance to cover their meal cost. One of my jobs is to divide the cash into individual bundles for each student. It involves a careful, almost meditative process in which smaller bills are folded and wrapped inside larger ones (so that students, staff and coordinators can easily distinguish them by touch). The cash bundles are then placed into envelopes and given to our mentors, who distribute the bundles to each of their students. There is something symbolic about passing the cash through our staff mentors, to our students, who are entrusted to spend it appropriately. When we empower students in this way, they learn important life lessons like “if I get the cheaper sandwich, I’ll have enough money left for an ice cream”; ask questions like, “What can I buy here if I only have $3.50 left”; and have discussions about things like how much you need to budget for tip at a sit-down restaurant. The cash bundles are emblematic of our broader philosophy of incorporating self-determination and problem-solving opportunities into everything the students experience.

There are several things that make Project RISE unique, but by far the biggest is the central role of our core mentors. All are blind professionals (or advanced college students) who serve as positive, enthusiastic role models. We also draw upon the vast network of our parent organization, the National Federation of the Blind, to match our students with professionals who can offer career development opportunities. The design is to develop a mentoring matrix in which each student has multiple mentors, and each mentor works with multiple students. For example, in a given year, one of our students may have a relationship with their primary core mentor. They may also spend time with other core mentors in a group setting, and they may be further mentored by different professionals during an informational interview, a brief job-shadow, and then a more involved summer internship. On top of all this, our older students often provide informal peer mentoring to our younger students, offering advice, wisdom, and encouragement to younger students facing situations they have faced themselves.

In our promotional video, one of our students says about our program, “For me, it’s about the people that I meet. It’s about the people I’m able to connect with and the relationships I’ve formed, especially the mentors, they’ve been huge role models in my life and they’ve shown me what I can achieve.” This video was made only a few months after our program started, and in the subsequent 18 months, this student’s network has grown even larger. Ultimately, the relationships seem to be the main source of success for our students, and the main incentive for them to keep coming back.

This job stretches me in different ways than my doctoral training did. It can be challenging to work with so many different groups-students, parents, fellow staff, employers, and vocational rehabilitation counselors. The stakes are higher when we are talking about working with real people and not just research data. I have to stay at the top of my game. But, it has been worth it to invite so many promising young people into our community. I am excited to find out what they will achieve and to keep working beside them.

I first posted this three years ago, after a busy day walking around northwest DC. It contrasts wise and unwise approaches to helping a blind person cross the street. As you read, note how the first (wise) offer of help was framed as a question, while the second (unwise) was framed as a statement. Also note how the wise helper in the first scenario was positive and responsive to me, while the second “helper” was not. While I am sure both individuals had great intentions, a few critical differences in execution can transform an interaction from helpful to confusing and possibly harmful.

Today I would like to compare and contrast ways to help me cross the street. I encountered both of these yesterday.

*Helpful*

Woman (As I approached intersection): The light is green, do you want any help crossing?

Me (while pausing and listening to confirm that parallel traffic is moving beside me) Is there enough time to get across?

Woman: Yes, there are 26 seconds left on the walk sign.

Me (stepping across beside woman) Cool, thank you so much!

*Not helpful*

Man (as I round corner and begin searching for crosswalk with my cane) It’s this way!

Me: I ignore man and continue searching for crosswalk, aware that man has no idea which direction I want to cross, and if I obey him, I could very well end up crossing south instead of west. I know this from experience.

Man (as I backtrack slightly and find crosswalk) No no.

*I continue to ignore man, confirm I am in the correct crosswalk, and cross when the light changes.*

**Analysis: Note that in the first example, the woman asked if I needed help and allowed me to request useful information (how much time is on the walk sign). She also waited long enough for me to process what I was hearing so I could make my own decision about it being safe to cross. In the second example, the man didn’t ask what kind of help I wanted or needed, and his rebuking “it’s this way” didn’t make much sense to me because it was given out of context. It also distracted me from getting the information I needed to make my own decision about where to line up for the crossing.

**Take-away: Offering help or information is great, but it’s best to ask first if the person wants help or information. This allows the person to request help or information that is appropriate in the particular instance. Offering good assistance is about starting a conversation, a dialogue, rather than a one-sided interjection.