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“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.

A five-year-old boy, let’s call him Sam, is at his grandmother’s house watching his favorite television show. He watches the firemen with their big red trucks and blaring sirens, rescuing people from danger.

“I want to be a fireman!” he tells Grandma with excitement, but Grandma says he can’t.

Three years later, Sam’s little brother Joe turns five. Joe tells Grandma that he wants to be a Christmas elf, making toys in Santa’s workshop.

Grandma says nothing.

Why is Sam discouraged from his dream, while Joe is not?

If you guessed that Sam has a disability and Joe doesn’t, you would be correct. This story was adapted from this article written by a blind man who dreamed of being like the firemen he watched on the show Emergency. He was told he couldn’t be a fireman because he was blind. But, when his sighted brother wanted to be a Christmas elf, an entirely fanciful career, nothing was said.

I sometimes get questions from parents or teachers of disabled children. “Should I tell my child [or student, or loved one] that they can’t really be a [fireman or policeman or astronaut or heart surgen] because of their disability?” They might say they don’t want the child to get false hope, or they want to be “realistic.” We mustn’t forget that many young children’s fantasies for their futures are not realistic at all. Sadly, the socially constructed narratives we hold about disabilities are so focused on deficits that they obscure the power of imagination. Not just imagination about how disability-related barriers might change by the time a child is grown, but also the imagination that comes with early-childhood fantasy. I am not sure if a study has been done, but I would guess that few adults end up in the career field they fantasized about when they were five.

I tell these people to use their children’s interests as a springboard for learning. If the child wants to be a pilot, even if the government says (in 2019) that their disability will disqualify them, give them books and videos about famous pilots. Let them visit flight museums. Talk to them about all the different career options available in aerospace. Incorporate flight topics into lessons about other things.

Children with disabilities are overwhelmed with messages about their limitations from an early age. They will quickly figure out what society expects them not to be able to do, without explicit instruction. I see no reason for parents or educators to deliberately add more negative messages to the mix. Instead, help kids gain an experience base to evaluate what professions they want to explore further

There is a time to be “realistic” about career goals, though. Regardless of disability, teens and young adults are saddled with the important task of refining their professional goals. In the best-case scenario, youth will choose careers that not only match their passions and aptitudes, but where there are plentiful job options. In reality, young people may explore several career goals in a nonlinear process. I’ve heard that the average college student changes their major three times. Disabled students, too, will engage in this kind of experimentation, but it can be more challenging to change majors or to end up in a career field with few job opportunities.

In our youth program, we use career assessment tools like the Career Index Plus to help our students (ages 14-21) refine their career goals. These assessments provide information on careers that most closely match the student’s self-identified strengths and work preferences, and allow students to learn about the pros and cons of these different careers. We also have students interview professionals workig in fields of interest to find out what a typical day is like in their job, what the educational path looks like to get into their job, and what qualities someone needs to do well in their job, among other things.

I don’t think a 16-year-old should be expected to set a firm career goal just because they are disabled. I do think that if well-implemented, “pre-employment transition services” can help disabled students to set strong vocational plans, identify employment barriers in their chosen field and ways to overcome them, and build up their professional networks. Arguably, a professional network is even more important for a disabled job-seeker than for a nondisabled one. Mentors and colleagues can help vouch for a disabled applicant’s qualifications, counteracting stigma and low expectations. A final part of pre-employment transition services, work experience, is beneficial for all youth, but disabled youth may struggle to gain early work experiences without support. Whether the work experience is babysitting, bagging groceries, or doing an internship related to one’s career goal, youth will gain required workplace skills as well as evidence of their employment potential that they can show to others.

I hope that someday, I can live in a world where nobody even considers questioning the dreams of a young disabled child. Where our instinctive response isn’t a “can’t” but a “why not?” Where we can respond to the ambitions of our disabled brethren at any age with information, tools, and support. After all, believing in inclusion is our first step to achieving it.

Recently on the Disability Wisdom Discussion Group, we brainstormed a list of disabled people who have been highly impactful on their professions or on the world. This list, written in no particular order, represents the collective contributions disabled people make in their communities. Of course, this list only scratches the surface, as there are many others with disabilities, some whose disabilities are undisclosed, who have impacted the lives of others. One thing, I hope, is clear: If we exclude disabled people from public life, we would be depriving our society of a lot of talent, innovation and creativity.

• Temple Grandin.
• Daniel Kish for Mobility/psychology/motivational speaking. Jenny Lawson for writing. Anthony Hopkins for acting.
• Joanne Wilson, Pamela Allen, Jennifer Kennedy, Kenneth Jernigan for blindness rehabilitation.
• Stella Young, who coined the term “inspiration porn.”
• Gavin Newsom, the governor of California, is dyslexic.
• I think Danny DeVito has some kind of disability… Either a learning disability or dyslexia.
• Stevie wonder, hellen keller, ray charles
• Jacob Bolotin was a blind doctor in the early 1900s.
• Marcy Roth is really, really cool. She handled a lot of disaster releaf via fema,, did a lot of advocacy worldwide, and is now the executive director of the world institute on disability.
• David Patterson, governor of New York, 2008-2010, is blind.
• How about Vernon Smith, the Autistic economist who won a Nobel in 2002? Or Greta Thunberg whose activism has taken the world by storm (sorry for the climate pun)? Autistic actors Daryl Hannah and Dan Aykroyd ?
• Judge Tatel on the DC Circuit. He is totally blind and considered a “feeder judge” (i.e. a judge whose clerks often clerk on the Supreme Court).
• Greg Abbott I’m fairly certain that’s his last name, governor of TX and a wheelchair user.
• I typed in famous people who are bipolar. I got Mariah Carey, Russell Brand, Demi Lovato, Carrie Fisher…
• Kody Keplinger is a legally blind author. She wrote The DUFF.
• Judy Human for wheelchair user and all around amazing person!
• Haben Girma. A DeafBlind lawyer
• Tammy Duckworth. She’s a senator from Illinois and a double amputee. She appears publicly with either her prosthetics or in her chair.
• Paganini, the virtuoso violinist, had some sort of connective tissue disorder, probably EDS. He had other cronic illness situations, but the disorder probably contributed to long term health problems and his death. However, because of the hypermobility of his finger joints, he was able to do incredible things on the violin that others could not.
• U.S. presidents: President Woodrow Wilson had a learning disability. President James Madison, Father of the Constitution had seizures. President Grover Cleveland was a cancer survivor. President Roosevelt had polio and he was a wheelchair user.

From the UK: Tanni Grey Thompson – multiple gold medal winning Paralympian, Baroness and member of the House of Lords ( one of two Houses of Parliament here )
Disability campaigner, wheelchair user.
She is always tweeting about problems accessing trains yet she has a train named after her because of her achievements ! Liz Carr, Actress , notably Clarissa in Silent Witness, writer and disability rights campaigner , wheelchair user. David Blunkett , blind former MP and Home Secretary

• Historically, Homer, Milton, Beethoven, Harriet Tubman, Sojourner Truth, and Fannie Lou Hamer all had disabilities.
• Couple more: Christine Ha (blind winner of MasterChef) and Geerat Vermeij (award-winning blind geologist).
• Tim Cordes, blind physician.
• Annette Funichello and Selma Blaire are both acclaimed actresses who continued to work after an MS diagnosis. Selma’s red carpet cane inspired me to suck it up and get my first cane.
• ·         And many, many more!