Thursday, March 31, 2011

A Creaky Door

In the abuse prevention workshop for people with disabilities, we have a discussion about feelings. As I have mentioned before, this is an area of great fragility for many with disabilities. As those who have been controlled by others, there were few feelings allowed. 'Happy,' being the only one that was truly acceptable. Sadness can be annoying and anger simply disrupting. You may think I exaggerate this point but I assure you I do not. Those of you who work with people with disabilities can attest to the fact that a woman with Down Syndrome, crying, will state with vigour that she is 'happy'. A man angered because a plan didn't go through, will state in angry tones that he's 'happy'. In the time not long past, but past, they've learned there is one acceptable way to be. Punishment or pills will beat down other strong emotions.

So to bring forward the four basic feelings, 'glad,' 'sad,' 'mad,' and 'scared', enters the group into a bit of worry. They look at me suspiciously. Am I tricking them? By then in the workshop a feeling of safety has eliminated some of the hierarchy between teacher and learner, so they loosen up and talk. Happy brings forth all sorts of examples. The other emotions brings forth all sorts of truth.

When we spoke about 'sad' a man, with Down Syndrome' sat staring. He turned around in his seat and carefully watched every person who came forth with an example. Part way through he raised his hand, everyone stopped. He got up. Moved his chair, turned it around to face the audience. I felt at first like my workshop was being hijacked, but something told me to shut up and simply wait. I listen to 'something' when 'something' talks. He then spoke for a few minutes about the death of his mother. He put his hand over his heart and indicated that it was broken. He spoke about grief and he spoke about how much he loved her. I got the sense, and it was only a sense because I never asked, that it was the eulogy he hadn't been allowed to give. Once done, he got up, nodded at me, and returned his chair to position. We were all quiet. When he was sat down again he nodded at me with a 'you can now continue' authority.

Continue I did. But something had happened. The room was touched by what he had said, things came out about sadness. People spoke about being teased, they spoke about exclusion, they spoke about not being listened to as people with disabilities, they spoke about wanting in but being kept out. I felt like I was looking deep into the hearts of those who had disabilities.  One man, who never participated to this point, put his hand up. 'What makes you sad?' I asked.

'Not being loved,' he said. No tears, no histrionics, just a quiet statement of despair.

I wanted to say something, to deny his feeling, to make trite what had happened. A 'well, we all love and support each other here' kind of thing. But, first, we don't. And second, 'I had asked, he had spoken, the least that I could give him was respect.' So I said, 'Yes, that is sad, very, very sad.' He nodded.

We moved on through the workshop.

Again and again I get reminded that people with disabilities feel what is done to them. Those who claim 'they don't understand poor dear' are in fact the poor dears who don't understand. People are people and people feel. Abandonment, victimization, loss, loneliness, grief.  They feel these things and more. I also learn that they feel joy and love and connection and comfort. I am left with only hoping. hoping that this man, who feels the lack of love, will one day welcome it's presence. He sits in a room full of people who have husbands and wives, children and grandchildren. He sits with people who have found love along their journey.

It is my fervent hope that one day his journey will take a turn, and there, unexpectedly in front of him it will be. Love, quietly waiting for a bus, or playing badminton in a park, or talking on a cell phone with a friend ... will be love waiting.

Waiting just for him.

He has learned what it is to live unloved, what a surprise awaits him when he is first held, in love, when he is first kissed, in love, when he first opens the creaky hinges on the door to his heart and welcomes home, love.

20 comments:

Kristin said...

What an incredible post Dave. That last paragraph really touched me. I hope and pray he experiences that lovely surprise sometime soon.

CL said...

Oh, wow. I don't even know what to say. Just heartbreaking.

theknapper said...

I remember someone saying, 'listenning is a subversive act'......How important it is to create space for others to talk and then to listen.

tekeal said...

thank you

Joyfulgirl said...

I never realised that before re. the denial of emotions - how startling and abusive and awful

Faery said...

Another post that has brought a tear to my eye. I can only echo CL though. Just heartbreaking.

Susan said...

There's a lot in what you've written today, Dave.

I'm learning that three of the most powerful words in the English language are:

"I get it."

To let someone know that you are listening and trying very hard to understand, acknowledge, and affirm their feelings is one of the most therapeutic things we can ever do - whether in our personal life or elsewhere.

People who deny the feelings of those with developmental disabilities would be able to eliminate the need for a lot of "behaviour management" if they just made an effort to really listen, acknowledge, and affirm the feelings of their fellow human beings. It's simple respect. And it doesn't take much...

I hope he finds love too. But if he doesn't, he feels comforted and reassured because someone respectfully chose to "get it". I'm so glad he had such a safe place to express his feelings.

Ellen said...

This is a very important post. Thank you.

ivanova said...

This is a wonderful post. I have a feeling I'll be referring people to this one in the future.

Anonymous said...

Dave,
I visit your blog frequently, and find many valuable "tidbits" to take with me. I just want to comment on the 'look' of your blog, for the lack of a better word. Sometimes I find all the graphics and colours very distracting. I don't have a visual impairment, but I imagine that someone who does may have a difficult time reading what you have to say.
Also, having your considered changing to the Verdana font (if possible)? It was designed to be easy to read, especially for someone with difficulties with their vision.
Keep up the good fight!

Anonymous said...

thanks, dave.

AkMom said...

Again,

Thank you, Dave.

I read every day, I need to let you know that.

Anonymous said...

Dave, you write with such power and beauty. I am thankful that your voice is part of my daily routine. I so wish I could participate in one of your trainings. We really have nothing like it for those living in this area with disabilities. If only we could clone you and you could teach us all how to lead such an open and healing experience for those in support. Thank you again.

purplefrog26 said...

Dave,
As one of my fave authors says. "My heart is too full for words." I am honored to read this.

Myrrien said...

One of the battles I think still to be one is the acknowledgement that people with disabilities (and for some reason down syndrome in particular) are allowed to feel grief at the loss of a loved one.I've never known how to adequately push families,often when experiencing grief themselves, to realise their relative is allowed to grief, they do understand and feel and sometimes to push to let them go to the funeral.

little.birdy said...

When I am working with my middle school students as a speech therapist, I try to let them know that it is okay to be mad or sad, and to express that with words. I think that sometimes people with disabilities who have trouble expressing their anger and are rebuked for physically lashing out or screaming start to think that anger is wrong. They have trouble separating their inappropriate reaction (such as screaming right in someone's face) from the appropriate emotion(being mad because a math problem was done incorrectly). Do you see that with adults?

Noisyworld said...

Wow!
I can't think of what to say that doesn't sound trite :/
Great post again Dave.

Kasie said...

Anyone who can or has continued to live life feeling completely unloved is a much stronger person then I. I cannot even imagine how he must feel or how he has survived. Even if he never finds a sensual love that includes intimate holding and kissing, I pray he someday feels a warm and comfortable love.

Belinda said...

Susan asked me several times today if I had "read Dave's blog yet?" Finally, very late, here I am. And it was like waiting for a really good dessert at the end of the day and finding it was every bit as good as I was imagining.

People's feelings aren't acknowledged enough and people's words aren't heard enough. That's true even in the non-disability world, but it is magnified many times for people with disabilities. A short time ago someone we support who is also a friend, read through a booklet our agency had written in plain language to welcome them to the agency. She said, "It doesn't say what to do when you try to tell someone something is wrong and they won't listen." We had the "lines of communication" outlined but not what to do if they broke down along the way. I passed along her concern but I'm still not sure we've addressed it well enough. This post makes me realize I have to make sure her message gets through and makes a difference.

Anonymous said...

I am a support worker to some adults who have intellectual disabilities, recently the elderly mother of one of the men died, I spent time sitting with him after he heard the news, he said to me" I feel sad I think I feel like crying but I dont know how". Because this man has lived in institutionalised care for most of his life, he has learned to suppress his feelings to this extent, it made me feel very sad and really heightened my awareness of tuning in to people's actions and body language more. Often when people are labelled as having challenging behaviour it is because it is the only means they have of expressing themselves.