This Is Not Okay

It has been a frustrating few weeks. A woman was sexually assaulted. She is experiencing trauma. She happens to have an intellectual disability. She cannot access counseling services because she is “too low”. That is discrimination.

I understand the concept of ‘do no harm’ in this situation. We should not further harm a victim of sexual assault through our interventions. But isn’t it harmful to deny services to someone who desperately needs them? Isn’t it harmful to tell the family “your daughter is too low”? I believe that a very harmful assumption has been made in this situation. I wish I could tell you this is unusual but it is not. It appears to be somewhat common practice to deny people who communicate in a non-traditional manner access to quality victim services. I am appalled and saddened by this.
Yes, it has been a frustrating few weeks. A different woman was sexually assaulted. She happens to have a developmental disability. The assault happened nearly three years ago. The family is fighting for justice in a criminal justice system that does not see this victim as credible. This, too, feels like discrimination.

I understand that this ‘case’ might take more time to collect evidence and to prosecute than in ‘easier’ cases. I believe that everyone communicates and that many people with communication disabilities can testify in court. I also know that sometimes an evidence-based prosecution may be the best course of action, but do we even try that when the victim may not be able to testify in court? I do not understand when people whose job it is to protect the public do not even try. I understand very clearly that the message to perpetrators of sexual violence across the nation is this: Sexually assault people with disabilities and nothing will happen to you. And unfortunately, the message to the victims with disabilities is often this: We do not care. I am appalled at these messages! We can do better!

Yes, it has been a frustrating few weeks. An excellent prosecuting attorney, who believes that the voice of every sexual assault victim should be heard in court, contacted me. A woman with developmental disabilities was sexually assaulted by staff at her group home. There was physical evidence. There was access. There was testimony. The jury voted not-guilty. The defense attorney called the victim evil and referred to the victim as an object. The offender on the other had was called a ‘person with a family’. So the victim (who has a disability) was painted as bad and the person who sexually assaulted her was painted as a person whose life has value. Apparently the jury believed this hateful story. When will the public be outraged at this targeted violence against people with disabilities? When will the public see people with disabilities as having equal value with other human beings?

Yes, it has been a frustrating few weeks. A young student was sexually assaulted at school. The student attends Special Education classes and has had no prevention education. Other students in the same school receive education on bullying, respect, healthy relationships, and reporting abuse….but not the Special Ed students. This feels like discrimination. And now I am not sure what I understand—why would we not educate the students who are at the greatest risk of experiencing bullying and other forms of violence?

Yes, I have felt a lot of frustration the past few weeks. So what happens next? Well, those of us in this movement at the intersection of violence and people with disabilities channel our frustration into our passion to make changes. We walk or roll side by side with people with disabilities and speak up about the issues. We work with families and schools and victim services and criminal justice personnel and hospital personnel and others. We use our voices and our actions to say this is not okay-- and we will not stop. I am grateful to all of you who are in this movement to stop sexual violence against people with disabilities. We are stronger together. Together we rise above the discrimination and create a world of equality and safety.

Getting For vs Giving From

I recently heard a comedian named Michael Jr. speaking on a radio program. He said something that really caught my attention ~ "Instead of asking what can I get for myself, ask what I can give from myself". For the past couple of days, I've pondered that, wondering what can I give from myself.

I find joy in giving gifts to others though it's not always without struggle and stress. I've struggled with trying to come up with the perfect gift for someone who is difficult to shop for. The stress of finding just the right gift in just the right price range for my budget. Hoping that the person really REALLY likes it. Wondering if it's the right color, the right size, the right everything. Will the person use it, wear it, return it? Sound familiar?

Maybe it's not tangible gifts that are most wanted, needed, appreciated, used. Like Michael Jr. said, maybe I should ask myself what can I give.

I realize that I can give many things from myself. My time...my attention...my ability to really listen to what someone is saying, asking, dreaming. All these things I can give are free! I don't have to stress like I've been known to do. The gift of myself can be priceless to the recipient, and I daresay priceless to myself as well. My gift of my time and attention, being fully present, is likely to be the right size and the right color and the right everything for the person to whom I am gifting it. I don't need to wait for a special day or time, any day and time will do, and in fact may be even better than an expected gift!

What can you give from yourself?

Dare to Dream

I remember the phone call clearly.

“I’m an intern at a United Cerebral Palsy organization. I work with a man who has a dream to do public speaking and I hear you might be able to help,” the young voice said.
“Perhaps. Can I speak with the person?”

A few minutes later, I met Curtis on the phone and we were talking about his dream to speak in front of groups. Four months in the future, we were doing a “Dare to Dream” workshop in his part of the state. We agreed that he would be one of the trainers. We exchanged contact information and set a date to meet in person.

The day before the workshop, a colleague and I met Curtis, a man with an amazing light in his eyes and many dreams in his heart. As we got to know each other, he shared the ‘best day of his life” as a weekend when he went out of state and joined other voices for the rights of persons with disabilities. We were sitting with a civil rights activist and we were in awe, open to learn.

He then shared the “worst day of his life” and it turned out to actually be a nightmare that lasted several days. His personal assistant had helped him into bed on a Thursday evening, put the phone on the bed and didn’t return for four days. Curtis had called the police and asked for help but no one came. He was not able to get out of bed without assistance. We cried as we listened to his story. With his permission, we wiped the tears from his face. No wonder he’s an activist.

Our time together flew by quickly as we shared laughter, tears and even some silence. After a couple of hours together, this gentle giant said, “There is something I’ve always wondered about. Perhaps you two can help me understand.”
We nodded, “We’ll try.”
And then he leaned close and said, “What does it feel like to walk?”
Our new friend has never taken a step. The three of us shared our feelings and ideas. We decided that walking is just a way to get from one place to another and that we should all be able to do that equally as easy. But we know that isn’t the way it is. We believe that when society views people with disabilities as having equal value and equal importance that will be the case.

Curtis was an activist and a dreamer the rest of his life. He told us that he dreamed of feeling his toes in the sand on a beach. Curtis has left life as we know it on this physical plane. We can imagine the smile on his face and the twinkle in his eyes as he wiggles those toes in the sand and walks wherever he is.

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.