Empower

Words Matter

One of the biggest lies I was told as a child is the saying,

“Sticks and stones will break my bones but words will never hurt me.”

Words do hurt…a lot. Words can cause wounds that never heal, festering just below the surface like a toxic infection.

Words do matter.

Each year additional words are added to the dictionary as a result of common use in the culture. But what if we worked to systematically eliminate hurtful, pain-inducing words? I would like to nominate 3 words to be the first to be eliminated: nonverbal, inclusion, and can’t.

Nonverbal is misleading and inaccurate. All humans communicate, it is just that some are using a language that is not shared with the listener. Think about the experience of watching two young toddlers who are babbling, but not using more than a few understood English words. The two babies will babble to each other, interacting for an extended time, and often engaging in other activities together side-by-side. They are communicating something, but they are doing so in a language their parents don’t understand.

I have had students whose disability limits or restricts verbal speech. However, after getting to know the student, the para, peers, and I could understand the individual’s various facial expressions, gestures, or other sounds. We were communicating, albite in an unconventional manner. You see, no one is actually, completely, and fully nonverbal. Non-speech, non-signed language, or some other qualifier, but they are not fully nonverbal.

What about inclusion? Certainly, we need it, right? Wrong. We only have the word inclusion in our vocabulary because we have exclusion in our hearts or minds. Categorizing humans by ranks, castes, cliques, or groups is a sophisticated way to refer to exclusion. If we are all genuinely included, then exclusion becomes meaningless. Doesn’t that sound lovely, a world without exclusion? I continue to hope we will come to a point in our treatment of each other that inclusion, and its converse, exclusion, become meaningless and inconceivable by others. I long for the day that honoring and empowering each other is our culture.

Finally, I urge everyone to remove the word can’t from their vocabulary. Can’t is only true if you let it be so. The implication and unintended consequence of using the word “can’t” is that someone believes you. This is a large world full of possibilities. There is no room for can’t in the middle of possibility. I instead, true to use the phrase, “not currently.” For example, my child is not currently speaking. Or this young student is not currently reading independently.

These are three words that hurt my heart each time I hear them. I would love to know which words you would choose to eliminate and why. Feel free to add your thoughts in the comments and begin the work of eliminating words.

By the way, here is a blog with some other recommended words to eliminate if you are interested in a writer’s viewpoint.

Awareness campaigns are a powerful way to inform the community. A good campaign will include general information and a way to contribute to the cause. Some campaigns are annual events, such as autism awareness month. Others, like the ice bucket campaign for ALS, consist of short bursts of education and training.

But are awareness campaigns enough?

A colleague recently asked me this question and it made me wonder, at what point do we move beyond a need for awareness and shift to a call to action? Awareness absolutely has its place for a variety of causes. However, when it comes to autism or other disabilities, maybe it is time we shift to action. We need a call to stretch beyond awareness or acceptance to a place of true action. And, our action should include the individual with a disability, as a self-advocate and leader. Maybe what we really need is a campaign to empower?

Empower: make (someone) stronger and more confident, especially in controlling their life and claiming their rights.

The Britney Spears court case has recently called into question the concept of power and, ultimately, who has power. In Britney’s case, it is not her. Britney’s case calls into question the true definition of empowerment. She wants nothing more than the right to be confident and control her own life. This seems like a right that the majority of us have simply because we have had 18 birthdays. The reported reason for her losing the right is that she made one too many bad decisions. But again, why is she not allowed to make a bad decision? Don’t’ we all make mistakes? Isn’t that considered learning?

Britney’s case highlights the legal policies that dis-empower individuals all across the country. This is especially prevalent within the disability community. It is for this reason that I am calling to you, the next time there is a disability awareness campaign, leverage the energy and emotion to call for empowerment. This will not be easy and will require that we become informed and use multiple strategies.

One way to inform and empower individuals is through the Tennessee Center for Decision Making, shared in a previous post. There are also many small ways to help empower individuals including:

Allowing someone a chance to make a choice
Supporting a choice that is not the one you would make
Listen to their words and actions
Ask for their ideas and be willing to hear them
Watch for their lead
Seek leadership training through your state disability council or other state or advocacy agencies
Seek out postsecondary opportunities and choices
Work with a benefits counselor to better understand the options
Be the cheerleader, and not the coach

These are just a few ideas, and hopefully, they empower you.

Seeing Is Believing

They say that hindsight is 20/20, perhaps they meant, 2020.

2020 will always be remembered as the year of the pandemic, changing our entire world in what felt like a single moment. As state governors declared schools closed, we all naively believed that within two weeks we would return to normal. Instead, the closures continued, offices moved from skyscrapers to kitchen tables, and the longstanding inequities in each community were exposed.

School districts and community leaders could no longer deny the impact of inequity on the most vulnerable citizens: children. Teachers work tirelessly to create equity in their classroom, but those strategies did not translate in a virtual, distance learning environment. Some students went home to their own computer, complete with microphone, camera. They attended class uninterrupted from their private bedroom or an extra room in the home now referred to as the “classroom.” Other students went home to shared spaces that inhibited concentration and focus sharing a single smart phone and rationing data minutes to attend the most essential classer. Some students went home to parents who now worked from home while others had parents who were still working and now needed the children to care for and support each other throughout the day because daycare centers were closed.

Inequity occurred across the country and affected students of all ages. Students dropped out of college, no longer able to adequately access class, or because they needed to work multiple jobs to help their family pay basic expenses of rent, food, and utilities. Cries were heard across the country to open childcare so essential workers could remain working. Children were not able to visit parents in assistive or senior living to ensure their health or safety.

Individuals with disabilities have lived with the struggles of inequitable access, bias, prejudice, and unnecessary obstacles every day of their lives.

The pandemic made it increasingly more difficult for individuals with disabilities. Home care workers were fearful. Resources and food were harder to access. Essential medical treatment, medications, and personal protective equipment were allocated to essential workers and the “able” or “healthy.” Family members or support personnel were no longer allowed to accompany them as they entered hospitals or doctors’ offices.

Living through the pandemic was so hard, but we can look at it as a learning experience. We can no longer hide from inequity. We can no longer excuse inequity. We can no longer close our eyes to the suffering of the members of our community. We saw it all in 20/20 clarity.

Moving forward we need to keep the clarity of hindsight and use it as a spotlight of focus. We need to find the solutions that not only create an opportunity for equity but ensure it. Can we ensure each family has the same space, materials, wealth, or technology? No. Can we ensure that a person can access the resources they need and have the opportunity to earn the life they want? Absolutely!

I thank 2020 for the clear vision of a future for everyone. We do not need to return to the past. Together, we can believe in the ideals of equity and make it our reality today.