Wednesday, December 5, 2018

Not There Yet

The death of President George H. W. Bush has prompted discussion of the Americans with Disabilities Act (ADA), which he signed into law during his time in office. The former director of the National Council on Disability described the ADA as “in effect the Civil Rights Act for people with disabilities in the United States.” It promised access to public spaces and an end to discrimination.

There’s no question that the ADA has improved life for people with disabilities. There’s also no question that we still have a long way to go, perhaps especially when dealing with poorly understood disabilities such as chemical illness. There’s no exhaustive list of disabilities covered under the ADA. Instead, it applies to conditions that substantially limit one or more life activities. A webpage on employment law provides a list of 25 and states that “If any of these above tasks are affected by your multiple chemical sensitivities, then you probably qualify as having a disability under the ADA.” The Job Accommodation Network offers suggestions for accommodating people who react to chemicals in the workplace. 

Unfortunately, qualifying for accommodations and receiving them are two very different things. On a regular basis I read the accounts of people with chemical illness fighting hard to stay in work situations which are making them sicker by the day. Although public buildings such as schools, doctor’s offices, restaurants, hotels, theaters, grocery stores, and shopping malls are all directed to comply with the ADA, access for people with chemical sensitivities tends to be limited and problematic.

It’s unfortunate that sometimes change only comes when forced, but however it comes, progress is welcome. The city of Detroit was ordered to pay an employee $100,000 for failing to address her ongoing reactions to a co-worker’s perfume, and within a week, according to the book The Case Against Fragrance, the city instituted a fragrance-free policy in all its workplaces. The Labor Law Center notes that it also added this to its ADA Handbook:  “Our goal is to be sensitive to employees with perfume and chemical sensitivities. Employees who are sensitive to perfumes and chemicals may suffer potentially serious health consequences. In order to accommodate employees who are medically sensitive to the chemicals in scented products, the City of Detroit requests that you refrain from wearing scented products, including but not limited to colognes, after-shave lotions, perfumes, deodorants, body/face lotions, hair sprays or similar products. The city of Detroit also asks you to refrain the use of scented candles, perfume samples from magazines, spray or solid air fresheners, room deodorizers, plug-in wall air fresheners, cleaning compounds or similar products. Our employees with medical chemical sensitivities thank you for your cooperation.”

Churches must comply with portions of the ADA, but are exempt from other provisions unless their buildings are used by covered organizations. If your church isn’t forced to comply, should it do so anyway? A Christianity Today posting argues in the affirmative for two basic reasons: all people are of equal worth and deserve inclusion, and the church is stronger when it welcomes and respects everyone. The president of the nonprofit organization RespectAbility notes that if people with disabilities aren’t welcomed in a church, their family members may also be unlikely to attend. She notes that one in five Americans has a disability and that 52% of Americans have a loved one who is disabled. She states, “It is a massive loss for churches if they don’t have people with disabilities in their congregation.”

I’m grateful for the work that President Bush did to advance the cause of the disabled and I look forward to seeing accessibility increase. As Bush said when he signed the ADA into law, “Let the shameful wall of exclusion finally come tumbling down.”

Tuesday, January 16, 2018

Linda and Penny

One of the silver linings of chemical illness is that I've met some wonderful and inspiring people who share the condition and model for me how to face it with grace and faith. One of them is Linda Baker. Linda sometimes shares interesting stories from her past on Facebook and she recently shared this one. She gave me permission to reprint it here and I hope you'll take time to read it.  

I found her huddled under a clear plastic tarp in a downtown alley. Fearing the worst for my friend Penny (not her real name), I had driven to Joplin with some supplies that might help keep her safe from the approaching winter storm. She was not in her usual place on the sidewalk outside the newspaper office, so I had begun to search the alleys. Finally, I saw her wedged between the two carts that held all her belongings. She had rigged the plastic tarp over the carts to form a sort of tent, with her back against a concrete block building.

Calling her name, I got out of my truck. There was no reply and the figure under the tarp did not move. The sharp wind took my breath away as sleet began to pound a path to the ground. I called Penny’s name again. Nothing. Fearing I might be too late to help her, I lifted a corner of the tarp. There sat Penny, wearing a thick scarf and earmuffs. She had not heard me calling.

Penny broke into a big grin and said, “I’m so glad you came! Can you get me some coffee?” Sure, I could do that. I also offered to bring her a sack of plain Wendy’s hamburgers, which I knew was one of her favorite meals. She clapped her hands in delight. I gave her the thick wool socks and gloves I had brought along for her, as well as some homemade high energy snacks. I wished I could do more. I offered to take her to a shelter. She explained that she had tried every shelter in town and that her body just couldn’t tolerate the pesticides and cleaners and disinfectants used in them. She had become severely ill from those exposures. I understood that. She was in a really tough situation.

Penny had been a straight A student in High School and had a typical upbringing. She married and had a son. She worked as a waitress at a little cafe on Main Street and was living a happy life until the day the restaurant was sprayed with pesticide. She became violently ill and passed out. Other employees carried her next door to the clinic. She was having great difficulty breathing and almost died. When she finally began to recover, the doctor told her she could not go back to work and would have to avoid further exposure to pesticide.

She had a difficult choice to make. Her family needed the income from her job, yet she was risking her life to go back into that toxic environment. She decided to try working again, but became seriously ill. In time, she lost her job, her family, her home, and her health. No longer able to tolerate any environment that had been sprayed with pesticide, she tried living in first one apartment, then another, but they had all been treated with pesticide. Finally, in desperation, she had begun living outdoors where she could breathe easier.

That is how I met her. People in town just called her “The Bag Lady”, but Mom and I knew she had a story. We used to take her hot meals on cold days. It took a long time before she fully trusted us, but when she finally did, her whole face would light up when she saw us coming. Various agencies tried to help her, but her body would not tolerate indoor environments. One day she shared her story of how she had ended up on the street and showed us a little duffel bag nestled among her other supplies on one of her carts. That bag was stuffed full of articles about allergies, chemical sensitivity, reactive airways disease, and other medical issues. The articles were organized into categories and her filing system would put mine to shame. She spent many of her days in the library and had carefully cut out articles about her illness from magazines that people were giving away. She knew what was wrong. She just didn’t know what to do about it.

Then came the day that we couldn’t find Penny. We had searched around town and even asked the librarian if she knew where Penny had gone. No one knew. By chance (although I know it was really God’s timing) I was driving through downtown Joplin one day and thought I saw Penny’s carts outside the library. I parked and went in. There sat Penny, who was thrilled to see me. She had caught a ride to Joplin, in hopes that they had more resources to help her.

When the library closed, I walked with her back to the spot where she was living. A couple of guys from a church down the street wandered by handing out Bible tracts. While one of them talked to her, I asked the other one if Penny could possibly come into their lobby long enough to warm up on the coldest days. That man looked like I had just asked him to pay off the national debt! Why, NO, she couldn’t come into their church building. Well, not unless she planned to come to church regularly and tithe! I tried to explain why they could not count on her attending church. The man looked very uncomfortable and you could tell he just wanted to be anywhere but standing there talking to someone who was asking him to help a homeless person. I frankly was appalled at his lack of compassion.

It wasn’t long before Mom and Dad went to Joplin for a medical appointment. It was bitterly cold and they had a sleeping bag and warm boots and gloves for Penny. They were disappointed when they couldn’t find her. Suddenly, Mom spotted her carts outside a downtown bar. Now, my mom had never been in a bar in her life, but she marched right in. Penny was seated by a front picture window. She explained that she had gone to the downtown church and asked if she could come in to warm up. They told her NO and turned her away. Meanwhile, the owner of the bar saw her suffering in the cold wind and had gone to invite her in. He told her she was welcome to stay until the bar closed at 2 AM and he brought her a hot meal. I will let you draw your own conclusion about who showed her Christian compassion.

These thoughts were going through my head as I started to go get hamburgers and coffee for Penny on that stormy winter night. A mixture of snow and sleet was coming down and I knew it wouldn’t be long before the roads became hazardous. As I got in my truck she hollered, “Could you get me one more thing?” I said, “Sure” and came back to see what she needed. Well, she asked for cigarettes. I hesitated and said, “I don’t think I can get you cigarettes.” She looked puzzled and said, “You’re over 21, aren’t you? Of course you can buy me cigarettes. You would be surprised how much a lit cigarette can warm up your hands on nights like this.”

Hmmm…. now I had a dilemma. I had never purchased cigarettes and really didn’t want to get them for her. I debated about what to do. Then, somewhere in my spirit, I heard a little voice say, “Who are you to judge her? You are going home to your nice warm house. She is spending the night .. and the next … and the next under a tarp in freezing cold weather. Help her any way you can.” She got her hamburgers and coffee -- and cigarettes.

With this current cold weather, Penny has been on my mind. There are countless people homeless, just trying to survive the day. Perhaps you will have an opportunity to donate your time or money to help them. Perhaps you can say an extra prayer for all those who are homeless. Perhaps God will lead you to meet your own “Penny”. Jesus cared about those people that society ridiculed or forgot. May we all follow His example.

“You will be judged on whether or not you are doing what Christ wants you to. So watch what you do and what you think; for there will be no mercy to those who have shown no mercy. But if you have been merciful, then God’s mercy toward you will win out over his judgment against you. Dear brothers, what’s the use of saying that you have faith and are Christians if you aren’t proving it by helping others? Will that kind of faith save anyone? If you have a friend who is in need of food and clothing, and you say to him, ‘Well, good-bye and God bless you; stay warm and eat hearty.’ and then don’t give him clothes or food, what good does that do?”
James 2:12-16