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My Father's Eyes by Sheila Allee

My Father’s Eyes

by Sheila Allee

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It’s the stares, not the stairs

You would think that the one place in the world where people with disabilitiesAccessible Path To Church would be welcomed and accepted would be the church. Sad to say, with a few exceptions, it’s not the case.

That being said, I was happy to read an article in the Orlando Sentinel about several Florida churches that are making a concerted effort to be more inclusive.

The focus in the article is not on architectural barriers in church buildings, but rather on attitudinal walls that separate those who have disabilities and those who don’t. As one person put it, it’s not the stairs, it’s the stares.

I can’t imagine what life would be like if I was the object of stares or if people gave me a wide path because I had a disability that made me look or act differently. I suppose it’s understandable to some extent, but it shouldn’t be in a church setting. Speaking as a church member and a Christian, it’s incumbent upon me to be more aware and more open to all people.

The article mentions “disability theology,” which is a new term for me. It essentially means that people who have disabilities are created by God and they have special gifts to offer others.

Disability theologians contend that people with disabilities don’t need to be fixed. They just need to be accepted and welcomed.

I certainly found that to be true with my Uncle Melrose, who had a severe intellectual disability but an incredible capacity for love. I discovered that by welcoming him into my life, it was a win-win for both of us.

I’m also happy to report that my uncle loved to go to church and he did so every chance he got. I hope he got the love and acceptance he deserved on those long ago Sunday mornings.

Capturing the Christmas spirit

Christmas tree and giftsI just went to a Christmas party for adults with intellectual disabilities and I have to say, if that’s the only holiday celebration I attend all season, I will be more than satisfied. Rarely have I seen such happiness and excitement, so many smiles and so much laughter.

I wish I could post pictures of all the happy people at that party, but each of the 50 adults at the event is enrolled in a day activity program at the local community services agency. Confidentiality laws protect their privacy.

So I will describe the best I can what I saw and heard.

Party central

When I entered the large room at the community center, all the party-goers were seated at round tables, eagerly awaiting the arrival of Santa Claus.

I spoke to one of the women, a tiny lady with delicate fingers and short-cropped hair, and introduced myself. She had a perpetual smile on her face as she repeated “I love you, Shee-uh.”

A tall, slender man, also with a permanent smile, roamed the room and silently hugged me every time he passed by.

When Santa arrived, there was a burst of shouts and applause before he started handing out gifts.

An older man with glasses and a thinning hairline was sitting off to himself when I approached him. He had gotten a Beach Boys T-shirt and CD, just what he wanted. I asked him his name and he said he’d rather be known as a Beach Boy.

At every table I visited, I was met with friendly conversation and pure, unrestrained love.

Annual holiday bash

Lucky for me, I get to attend a party like this every December. My Rotary club puts on a Christmas celebration every year for this same group and it is always the highlight of holiday festivities for me.

The first such party I attended five years ago was an unforgettable experience. As the men and women sang Christmas carols and shouted at Santa, I was overwhelmed and couldn’t stop crying. I’m not used to weeping in public like that and did my best to stop the tears, but I wasn’t very successful.

The next year, I was more composed. Each year, I’ve been able to overcome my reluctance and shyness and have been able to interact more freely with our guests.

These men and women capture the true joy and bliss of Christmas. We should all be so lucky.

Why unemployment is higher than we think

Diane paints a ceramic piece at Brookwood.

Diane paints a ceramic piece at Brookwood.

“We give folks meaningful work and something to look forward to.”  Travis Duncan, Development Officer, Brookwood Community

 

When I heard Travis say those words on a tour of the Brookwood community last week, I couldn’t help but think of my Uncle Melrose and how he would have welcomed meaningful work.  Instead, he spent decades in an institution and had countless days of boredom and inactivity.

Thankfully, the world has changed dramatically in the past 50 years, and places like Brookwood near Houston are showing us what people with disabilities can do if given the chance.

A purpose in life

Brookwood offers meaningful jobs and a sense of belonging to adults with disabilities. It is home to 105 individuals, some of whom live in houses on the grounds and others who live in dorm-like settings on campus. In addition, 83 others live elsewhere but come to Brookwood to work every day.

The workers produce pottery, plants, greeting cards and food items for sale in the Brookwood store. Proceeds from these sales pay for almost half the cost of running the community.  The rest of the funding comes from tuition and donations.

As I toured the workshops, I was struck by how happy everyone seemed.  Diane, who was painting a ceramic piece, told me it was her first day in the shop. But you wouldn’t know it by the professional job she was doing.

Putting people to work

“A lot of our men and women have only been told what they can’t do,” Travis said. “Here at Brookwood, we find out what people can do and put them to work using their skills.”

Believe it or not, the same thing used to be the case at the farm colony where Uncle Melrose lived for almost 40 years. When he first moved there in 1956, the Austin State School Farm Colony was a working farm and dairy.

Even though my uncle had a profound intellectual disability, he was able to do some kind of work. A former staff member speculated that Uncle Melrose may have done something in the cannery, where the crops were canned and packaged for consumption at other institutions.

Whatever he did, he had fond memories of those days when he had a job to do. I asked him one time if he had ever worked with chickens on the farm, and he responded with greater than usual enthusiasm that he had.

Abuses led to idle time for all

Unfortunately for Uncle Melrose and thousands of other residents like him, the free labor they provided was considered somewhat exploitive – especially for the more able-bodied among them. Higher functioning individuals were assigned to bathe, feed and dress the less capable residents. Some worked in the laundry and in the kitchen.

It wasn’t affordable for the state to pay these workers, and so they worked for free until the courts ruled in 1974 that they were entitled to protections under the Fair Labor Standards Act.

This was a tragedy for Uncle Melrose, who then lived the next 20 years with too much idle time and no sense of purpose in life.  I wish he could have gone to a Brookwood, where they would have put him to work emptying trash cans – one of his favorite activities.

How I sold my uncle short

Theatrical masksThe tragic deaths and injuries at the Boston Marathon bring to mind how hard it is to talk about difficult subjects to people who have intellectual disabilities. I struggled with this issue as I developed a friendship with my Uncle Melrose, who had a profound intellectual disability.

Because he could say only a few words, it was not possible to have a conversation with him or to find out if he understood what I was saying. I could ask him a question, but he often could not respond.

When my dad, Melrose’s brother, died, I thought about taking my uncle to the funeral, but my family counseled against it.  He wouldn’t understand what was happening, they said.

Shielding my uncle – was it the right thing?

To some extent, that was probably true. After his mother died in 1943, Melrose kept asking where she was. I don’t know if he went to her funeral, but my guess is that he did not. I don’t know if he ever saw her in her sick bed when she was dying of cancer. By the time she fell ill, he was living in an institution.

I worried over whether I should tell my uncle that his brother had died, and in the end decided against it. It was so hard to know what Melrose understood and how such news might affect him. He had no coping mechanisms for grief and I didn’t want to cause him anguish.

But I have some clues as to how much he could relate to feelings of sadness. He had a reputation for being concerned about his dorm-mates and housemates who were sick. He often sat at their bedside, just to be with them while they were ill.

My uncle understood death

After Dad died, he and I went to the funeral of one of his housemates. It was a beautiful service and Melrose seemed genuinely moved by the experience. In this case, I am sure he understood that his friend Arthur was gone and would not return to the home they shared.

Perhaps my uncle had a better understanding because he was able to be there and see Arthur through his declining days. Perhaps he could grasp the situation because he saw his friend being carried out of the house on a stretcher.

I’ll never know the answers to these puzzles. What I do know is that Uncle Melrose had a very high emotional IQ. He loved with complete abandon and accepted others without reservation. He loved to hug his friends and he just liked being with the people he cared about.

Don’t sell folks short

So I probably sold him short. I know we all sold him – and ourselves — short by not allowing him to be a part of our family experience.  Hiding the truth from those we want to protect is not always the respectful thing to do.

I hope that conclusion is not lost on those who are charged with sharing the news about the Boston Marathon tragedy with people who might have difficulty understanding it.