A Key May Be The Key

It seemed like a simple request. “I want a key to the front door.” Don’t most adults have a key to their home? Well, not if you have a developmental disability and you live in a group home. Staff had been told to record every request made by the persons at the home so this was recorded. “I want a key to the front door.” Oh my gosh, the discussion that happened over the next several days could have caused some strokes. “What if he looses the key?” “He can’t even put the key in the hole.” And on an don…..But finally, in a flash of humanity, Josh got a key to his home.

It was a simple request. No one really knew what an important request it was. After receiving his key, Josh got a lanyard for his key and wore it proudly around his neck (like many of the staff did). He showed it to his friends and everyone he knew and said, “My key, my home”. Those at his home and day program noticed something else too. Josh was happier. Josh got along with others better. Josh didn’t loose his temper like he had for so many years.

Yes, it was a simple request. A key. But what do keys represent? Freedom….independence…ownership….responsibility. A key was given. A ‘behavior program’ was dropped. A human being felt more valued. We are glad that Josh asked for a key and we are very glad that someone listened and understood. It may have been the key to happiness.

We were sharing the above story at a workshop for employees at an organization that supports people with developmental disabilities when a two people in the audience started looking at each other. It was one of those looks when you know there is something important they have been reminded of. One of the staff shared this story with the rest of us. “John collects keys. Lots of keys. At first we thought it was just a simple collection. Then we found out that he had been locked in a closet when he was younger. His key collection means he can get out of closed spaces. His keys mean he is safe.” Sometimes, a key is not just a key.

Hot Fudge Assumptions

As I walked past the table, I heard him say, “I’ll never eat here again. I wanted hot fudge on my ice cream and they wouldn’t let me have it. I said I would pay for it, but they said no.” We were at a restaurant having a good meal after a long day of traveling and disability rights rallies. The meal was prearranged and everyone had choices, but the choices didn’t include hot fudge. I am willing to bet that any other customer who wanted to pay for something on the menu would have been able to. Just what was behind this notion that “This customer is not right”?

We were able to find the answer when we asked the ‘boss’ to allow the customer to purchase the hot fudge. When the employee was asked to take the hot fudge order, I heard her whisper, “There is a good reason we didn’t do that. What if everyone wants hot fudge? She asked. (Wouldn’t that be good for business? I thought). She continued with, “Not everyone would have the money”. Hmmm….what an assumption….at most places, if you don’t have the money, you don’t make the purchase.

As it turns out, the employee with the ‘hot fudge assumptions’ about how to treat people with disabilities, worked for a disability organization. She is not a bad person. She has been trained to treat everyone the same, to be consistent and not to make exceptions. This happens every day in the world of disability services. Perhaps if instead, people were trained by the persons they are supporting, those supports would be truly person-centered. Perhaps if supports were individualized and not ‘one size fits all’, equity would occur. Perhaps if we all could see each other as having equal value as human beings, respect would be common place.

The young man got his hot fudge, but at what price? Let us learn from his experience.

“She can’t do that”…or can she?

Don’t you love those moments when you have definitive proof that what you are saying is true? That is exactly what happened to a colleague of mine who is a Training Coordinator at an agency that serves people with developmental disabilities. One day during training, the trainer suggested that we allow people the opportunity to share their dreams and to support them in obtaining their dreams. An audience member stated, “Well, Susie has a dream to work with kids. She can’t do that because she has behaviors.” The Trainer smiled and said, “Well that’s odd. She works in the nursery at my church and takes care of my children every Sunday.”

When we (humans) have the opportunity to do that which makes us feel happy and fulfilled, the ‘behaviors’ seem to slip away. I know that when I am bored, I am more likely to be ‘off task’. When I am on fire with passion and loving what I am doing, I am 100% involved in that activity. We all need meaning, purpose and passion in our lives. That longing inside of us is our purpose and it is unique for each person. It has nothing to do with having a disability; it has to do with being human.

And as for Susie, the only reason ‘she can’t do that’ is because someone made the wrong assumptions about her and had different rules for her because she has a disability. We can do better.

What Do You Love About Your Body? by Shirley Paceley

So I was part of a team that trained self-advocates and allies on starting empowerment groups. Each training team consisted of two self-advocates and one or two allies. During a 2-week period, we trained over 100 people and there were opportunities for participants to work in small groups, select an activity among several that were provided, and share the activity with the larger group.

One activity that was shared involved body image. So we were all asked to draw a picture of our body. Yes, we had lots of stick figures! Then we were asked to come up with five things we liked about our bodies. This was hard for some folks, cause don’t we tend to criticize our bodies on a regular basis? What a great exercise to think about what we love about our bodies!! Anyway, in one of the training sessions, each person was asked to share with the group one thing they liked about their body. We heard many things like, “I like my hair because it is long”, and “I like my smile”. A woman named Mary said, “I like what I can do. I can stretch and I can get out of my wheelchair by myself. I am grateful for what I can do” and she placed her hand on her heart. I LOVE THIS! Mary was my greatest teacher that day and I try each day to remember this lesson of gratitude.

The other part of the lesson is this: When we are in relationship with people, let’s focus on what the person can do—not on what they can’t do! I have a friend/colleague who said, “I lived in a can’t prison for many years. I want to be seen for what I CAN do.” And also remember to focus on what you CAN do. Together we can make a huge difference in someone’s life. Do what you can. Peace out.

Why Don't They Tell? by Shirley Paceley

Why don’t they tell? Blog by Shirley Paceley, Blue Tower Training

I am often asked by family members and professionals why self-advocates don’t tell when someone hurts them. There are a multitude of valid reasons and I want to explore that topic with you today. First of all, many people with disabilities are not taught about their rights to be safe—not told what abuse is and what to do if someone hurts them. When asked, “Why didn’t you tell me about this?” many people have said, “Because you didn’t ask.” So, by not teaching about rights and the value of speaking up for oneself and not asking when we notice changes in a person’s emotions or behaviors, keep the secret of abuse hidden in the silence.

Another factor in ‘not telling’ about abuse is that we often teach people to ignore it when someone hurts them When a person tells a parent, teacher or staff member that someone has called them a hurtful name, the response is often, “Just ignore them.” Words can be hurtful and telling someone to ignore hurtful comments is not helpful and actually may teach the person to “ignore it when people hurt you.” It may also teach the person that no action will be taken when they report being hurt. This is a dangerous lesson for us to teach anyone.

Self-advocates report many fears related to telling when they are being hurt. They report being afraid that no one will believe them; that they will be blamed for the situation; that they will lose their independence (e.g., “If I tell my mom I was raped on a date, she will never let me date again”.) that they will lose their home, their job, their children, their services, their friends and family; and also that the person who is hurting them will hurt them even more. Many times the offender of abuse of people with disabilities is someone who has power over the self-advocate. Also remember that offenders can be very charming. I know of many situations when the self-advocate spoke out about abuse and were openly criticized and humiliated for ‘trying to get someone in trouble’.

So, as family members, advocates and professionals, we can understand this issuer through the lens of self-advocates and learn to create environments in which people with disabilities can safely tell when they are being hurt and receiver a compassionate and individualized response. Here are some steps to consider:


1. Educate self-advocates about their rights, about abuse and reporting, about resources and options for healing if abuse occurs, and about peer advocacy.

2. Encourage and empower self-advocates who are interested in teaching their peers to do so.

3. Delete the phrase “Just ignore them” from your responses when someone tells you they are being bullied, etc. Listen to the person and engage with them to find an active solution.

4. Observe for changes in personality, emotions, behavior, etc. and ask the person what has happened.

5. Learn how to respond when someone tells you they are being hurt (see www.illinoisimagines.com for a variety of resources).

6. If you are a mandated reporter, tell the self-advocates you work with what this means. When someone discloses abuse, ask them if they want to report with you. Offer them an advocate. Keep them informed.

7. Make sure that people are never punished or criticized for reporting abuse. Believe and Listen. Inform the person of their options and empower them to make decisions.

8. Work with your community victim services organization. They can be of great value when someone has been sexually assaulted or a victim of domestic violence.

9. Explore with the person available options for safety and healing. Remember that recovery from abuse takes time and is not a straight path. Be patient.

10. Find ways to take care of yourself. When someone you care about is abused, it can cause you emotional distress. Taking care of yourself is a gift for you and the person who has been abused.

Feel free to contact Blue Tower Training for further discussion.

What do you see?

It was a conversation I have never forgotten. I was talking with a colleague one afternoon and we frequently had deep conversations so I was not surprised when she asked me a question I have never been asked before. With a serious tone of voice and somewhat desperate eyes, she asked, “WHEN YOU LOOK AT ME, WHAT DO YOU SEE?” I took a moment to look at her and I answered confidently and honestly, “I see a woman with a big heart, a kind person, a poet, a friend, a passionate person who believes strongly in equality and justice. I see a person with the courage to try new things. I see a colleague, a sister, a daughter, a trainer and a seeker.” She listened closely and then responded, “Really? Most people only see that I walk funny and talk funny.” This broke my heart. This amazing, talented woman was being excluded from so many life opportunities because she has a disability. So many people did not benefit from knowing her…because of what they saw when they looked at her. She had been denied so many opportunities, because of these same unfair judgments. So now this has become part of my training workshops—to encourage people to consider “what do you see when you look at someone with a disability? Do you see someone who is different than yourself? Do you see someone with feelings, and gifts and talents and contributions to make? Do you see someone who is broken or someone with lots of resources?” This is a critical question for those of us who work with victims with disabilities; for those of us who do prevention education; for those us who counsel survivors of trauma….for many of us. For us to do our work well, we must see the person first. If we focus only on the disability, we will miss the opportunity to know THIS ONE PERSON and all of the aspects of their humanity. This week I was speaking with a friend about victim services and she had this recommendation. “Hear my story. Get to know me. Don’t interrupt. And then it is okay to say: “I have worked with people with disabilities but I have never worked with you. I need you to teach me what I need to know to work with you.” Or simply, “How can I best help you?” Our attitudes and misperceptions often get in the way of equally including everyone in our work. So be aware of what you see when you look at someone. If you are making assumptions based on a label or a difference, find a way to shift your perception. And over the years I have learned it is not only important what I see when I look at someone else, but it matters what I see when I look at myself. So here is a question for you: “When you look in the mirror, what do you see?” Do you see someone who is capable and resilient? Do you see someone who can work comfortably with people with disabilities? Do you see your many talents and resources? Are you gentle with yourself when you make a mistake? Do you see your connection with all other humans? We are all a work in progress and that gives me so much hope for a better future. The key is awareness and openness to make changes. So, the next time you look at someone with a disability, know that you have the resources to make a difference in their life, just as they have the resources to make a difference in yours. Peace out, Shirley