About Emily

Sunday, March 20, 2016

The making of an inspiration porn star

“You done yet?” 

“No. I think it’s going to be a while.”

“I’ve gotta get to my next job by eight. You’ve been on the toilet for forty minutes, and at this rate, we’re going to have to skip your shower again. Shit fast, Constance.”

“I have a muscle disease, dude. I can’t push. Its just got to fall out when it’s ready.”

Constance tried to push, but nothing worked. Her stomach was cramping a little, but not enough to instigate a bowel movement. She looked around the bathroom and settled her gaze on her shower. She hadn’t had a hot shower for two days because of time. There just wasn’t enough time for her to get most of her routines done with just three two-hour shifts per day.  

Moving into her new apartment and starting a full-time job had added in new elements of stress. She was more exhausted by the end of the day. Her apartment was accessible enough, but the countertops sat higher than she could reach, and she struggled to do basic things like put on her make-up or brush her teeth. At night, since she didn’t have enough hours to pay for someone to stay with her, she would try to either sleep in her wheelchair or go to bed after her neighbor got home from his bartending job at two in the morning. Greg said he didn’t mind putting her in bed so she could sleep for a few hours before April came in to get her up at six, but sleeping four hours a night was taking a toll on her.

“Can you cut up an apple for me and put it in a zip-lock bag?” Constance asked April, her Personal Care Attendant.

“And when do you suppose that I will be able to do that? I can’t leave you here because last time I did, you fell forward on the toilet and you almost died.” 

“Die shmeye. That was because I was trying to brush my teeth and I was leaning forward to rest my elbows on my thighs. I’ll be safe. I promise. I could really use some fiber in my system. Might speed me up.”

April shook her head and rolled her eyes. She put Constance’s bony arm on the sink next to the toilet, so she could steady and keep herself from falling over. Then April headed into the kitchen to find an apple. 

“They have those cut-up apples at Whole Foods. You should just get them pre-cut. It will save you time.”

“I think they just stopped pre-cutting food because it’s bad for the environment or something. People were complaining about it.”

“Well, you should write some kind of letter and explain that ‘ain’t nobody got time for cutting apples’. Tell upper management at Whole Foods all about how it takes you an hour and a half to take a shit.”

They both laughed. Finally, Constance felt her body rise to the occasion and her system made a move. She looked at the time on her cell phone. Could she get showered, dressed, and back in her power wheelchair in just an hour? It would be close.

“I’m done!” Constance gleefully sang and April came running in. 

“Excellent! Unfortunately, we are going to have to probably skip washing your hair in favor of washing your smelly-ass body. Sorry. No time.”

April put on gloves and grabbed a handful of toilet paper. Constance leaned forward onto April and April reached back and wiped her ass.

“We good?”

“Again please.”

“Wow, Constance. What are you eating?”

“Burger Buddy.”

“I’m not sure Burger Buddy is your friend.”

They laughed again and April flushed the toilet, helped Constance pull off her nightgown, and carried her to the shower bench where they began the second half of their two-hour routine.

Forty minutes later, after Constance was dressed, the two returned to the bathroom to fix her hair. April reached for the dry shampoo and sprayed it through Constance’s long mane of hair, which was generally pretty course and dry, but now its texture had changed to more tangled and oily. She spent about five minutes attempting to comb through the long, curly, frizz, so she could put Constance’s hair in a bun. April didn’t want to tell her, but Constance’s hair also had a foul odor to it. As April raked her scalp and fought to make the bun stay in some kind of orderly place, she resisted telling Constance that her hair, which used to be what Constance said others told her was her best feature, was making her look dirty and unprofessional. 

As April wrangled Constance’s hair, Constance spotted some dried dry shampoo dust caked near the top of her ears and asked April to wipe it away. She felt gross even though she had just gotten out of the shower. She thought of her mother almost two thousand miles away, who would spend hours brushing her hair until it looked as shiny and silky as a model’s in a shampoo commercial. She thought of her first boyfriend in high school who always burrowed his nose into it and told her how great she smelled. Over the years, Constance’s hair was something she prided herself for having. It made her feel beautiful and sexual. Though today, and for the last few weeks really, she felt like she was losing this part of herself because she just couldn’t take care of it. When Constance dreamed of living on her own being an adult, she never imagined that she would have to sacrifice so many little parts of herself in order to survive and get basic needs met. 

“Okay, all done.” April set the comb on the sink and the two stared into the bathroom mirror together. “I’ve got to go.”

“Thanks for your help. I’ll see you later to pee?” 

“Yep. I should make it back here during my dinner break around five. You might want to wait to eat those apples because they hold a lot of water and you’ve got to keep your pee math in check.”

“I won’t eat them until a few hours before I see you again here.”

“But eat something okay? Something decent for you.”

“I think Burger Buddy has salad.”

“Yeah, right!” April laughed.

“Aren’t fries part vegetable?” 

April picked up her backpack and pushed a stray hair that escaped Constance’s bun behind her ear. She had been working with Constance for so long that she knew that Constance wouldn’t let her out the door without asking for one more thing, yet she didn’t know her long enough to predict the last thing. Because of this, April tended to move a bit slower right before exiting the apartment as she anticipated this last request.

“Hey, April?” 

And there it was.

“Whatcha need?”

“Could you help me put my laptop in my backpack behind my wheelchair? I think I’m going to head over to the library and do some dissertation research today.” 

“Sure thing. Ya know, it is a Saturday. Research isn’t exactly a relaxing thing to do.”

“It is when you’re a big nerd like me.”

“Right on. Right on.”


After five or so hours at the library, Constance’s stomach growled. She had about four hours before April would meet her back at her apartment to help her pee and figured that if she ate and drank something within the hour, she wouldn’t have to hold her bladder for too long. After twenty-two years, Constance perfected the pee math balance; knowing how much to consume and when to consume in order to predict exactly when she’d have to use the bathroom. While Burger Buddy wasn’t exactly the healthiest food option, it was cheap and she tended to always order the same meal, which allowed Constance to accurately predict how her body would react. Burger Buddy was also the closest eatery to her apartment. Constance could roll on over and not have to worry about the woes of city transportation. 

The most challenging part about Burger Buddy though, was getting the food prep and eating assistance. On most days, she could ask a customer to help her fill her drink at the soda station or grab a few packets of ketchup for her. Lately though, since she wasn’t able to sleep much at night, her arms felt heavier and she had more trouble eating because she couldn’t lift her arms enough to bring food to her mouth. Today was one of those days where she found herself struggling to even type on her computer. Weak days were the hardest. 

On her way over to Burger Buddy, Constance came up with a plan for today’s meal assistance. She would see if Jett was working. Jett was her favorite cashier. He was always the friendliest to her and helpful in a way that didn’t make her feel like a burden. If he was working and available, her plan was to ask him to cut up her burger for her. Rather than struggle to lift it up to her mouth, she’d just use a fork. 

The Burger Buddy was fairly empty, which was a good and bad thing. It was good because that meant that she wouldn’t have to take a busy employee away from their work when he or she was most needed. It was bad because no one was around to open the door to the restaurant. She had to sit outside the double door, like a dog waiting to be let into the house, and wait for someone to come by and pull it open for her. Finally, after about ten minutes, an employee inside Burger Buddy saw her and came running up to the door.

“Hey there! Come on in, Sweetheart!” Constance thanked him and went through the doors. “God bless you, you poor thing.” 

Poor thing? Constance rolled her eyes away from the gaze of Dole, the dutiful employee who held the door and spoke in the tone of a kindergarten teacher. Dole had his bright orange Burger Buddy t-shirt tucked in tight. His black pants were hiked up a bit too high for a man that looked to be in his late twenties. After she got in the door, Dole came running over to her and stood in front of her, blocking her view of the ordering counter where Constance frantically looked for Jett, the employee she hoped and planned to see. 

“Is Jett here?” Constance asked.

“You always ask for Jett. Jett. Jett. Jett. Unfortunately, Jett’s not here today, but let me help you, Sweetie. Do you want some ice water? It’s pretty hot out there!”

Constance’s face fell flat. While Dole seemed like a great worker, it was obvious that he was an over-helper. Over-helpers tended to get offended by cripples asserting their autonomy and wanting to be treated like adults. Like the fine balance of pee math, Constance recognized the need for balance when it came to serving others with disabilities. People like Dole never picked-up on that balance and passive-aggressively used their ability to help to inflate their egos. Yet, Jett wasn’t there and Constance was close to starving, so she felt she had no choice but to accept Dole’s help.

“Thank you for offering, but no water please. I can’t drink too much, but I can eat, so I think I’ll just go over there and order.” Constance headed in the direction of the counter and Dole, ignoring her refusal, started getting her a big cup of ice water.

As Constance made her usual order of a single patty with onions, ketchup, and mustard only with a small order of fries, Dole busily prepared the table where he had decided was best for her to sit. He had grabbed a handful of napkins, a plastic spoon, knife, and fork, and then started to fill little Dixie cups up with every dipping sauce available. Constance told him there was no need as she waited for her order, but he refused to listen.

“I’m here to help you, Sweetie. This is my job. Just ask, that’s all you need to do, Baby.” 

Constance fake smiled and forced herself to not just say she was taking her order to go. The temptation of just going home to her apartment and waiting on April to help her microwave and cut up her burger in four hours battled with her immediate hunger pangs. She decided to just suck it up.

Her order came up and before she could even turn her wheelchair on to drive towards the counter, Dole bolted for the counter. “Now slow down there, Speedy! I got this order. You just head over to that table over there and try not to run anyone’s feet over!” 

Dole snickered at his own trite joke that Constance had heard a million times over in her liftetime. As she drove towards the table that he had designated for her, she looked at the table in the back corner near the window where she usually sat. The table that she liked. The table Dole picked out was meant to seat a family of six and every single chair was moved out of the way. While her wheelchair wasn’t something she’d consider petite, it usually could fit easily at a table for two. A minute later, Dole arrived with her tray.

“Here ya are, Sweetheart. Do you need more help? Want me to unwrap this burger for you?”

“I’ll be okay. Thanks, Dole.” Before Constance could reach for the burger, Dole grabbed it and started unwrapping. 

“I got it” Constance snapped.

“Look, this is my job. I don’t mind. Okay?” Dole shot back.

Looking at his scary and frantic eyes, Constance had never felt so intimidated by a near stranger before.

“Thank you,” she said quietly.

“Is there anything else that you’ll need today, Sweets?”

Constance looked at the burger in front of her and the plastic fork next to her. Then she glanced up at Dole. His arms were crossed in front of his chest and his eyes had the look of someone waiting for a slot machine to hit the jackpot. 

“Dole, would you mind cutting up my burger for me?” 

Ding! Ding! Ding! Dole’s teeth were so huge and yellow when he smiled.

“Of course, Sweetheart! But what’s the magic word?” 

Constance’s stomach dropped and humiliation heated her cheeks.


“The magic word! Where are those gold stars when ya need them?”

Dole pulled up a chair and started cutting up her burger. Constance sat in silence and stabbed a fry with her fork while she waited. Suddenly, she lost her grip on the fork and it fell to the ground. 

“Damn it!” She said and tears welled up in her eyes. Dropping her fork was probably the worst thing that could have happened at that very moment because it fed Dole’s hunger to assist her. 

“Messy baby!” Dole cackled. “Now hold on there for just one second. I’ll go get you another one.”

No, I’ll get one.” Constance started to back up and Dole grabbed her joystick, which caused her to jolt backwards. Her neck whiplashed. 

“Please don’t touch my wheelchair!” she yelped and Dole held his hands up in front of her like she were a cop.

“Well, please don’t try to get that fork! You’ll make more of a mess. Just wait here and let me help you. Gosh!”

Dole stomped over to the counter with all of the condiments and plastic wear. Constance took a deep breath and looked at her trembling hands. She made eye contact with the young teenage girl behind the counter who looked in the direction of Dole and rolled her eyes. 

“Here we are!” Dole then stabbed a bite of burger with the fork and held it in front of her mouth. Constance froze and he stood there with one hand on his hip. “Take a bite.”

“I’ll be okay. I can feed myself.” 

Dole put the fork on the tray and pulled up a chair to face her. He leaned in, snarled, and violently whispered. “You people are so stubborn. Here I am, going out of my way to help you. You’re obviously not able to feed yourself. I have the time. What’s the problem here?”

Constance sat dumbfounded and shocked. This moment in Burger Buddy had added up to one of the most intimidating and insane encounters of her life. Overcome with indignation, she turned her wheelchair on and looked at him with eyes that said everything for a mouth too intimidated to move itself to words. She drove toward the door.

“Where are you going?” Dole shouted and got up to chase her.

“Fuck you!” Constance said, hitting the door to Burger Buddy as hard as she could to force it open. The glass on the bottom half cracked, but she didn’t slow down. As soon as the door cleared itself open enough for her to go through, she sped off as fast as she could. 


The following Sunday, after a week of avoiding Burger Buddy and eating granola bars and apple sauce, Constance was back in the library working on her research when she got an email from an old neighbor from back home.


The link below the message was a link to a YouTube video with over 200,000 views titled: “Burger Buddy Employee’s Kindness Caught On Camera”. In the thumbnail was Constance and Dole. He was leaning down and cutting up her burger. She clicked play and before her eyes was a stranger’s skewed view on his camera phone of what happened the week before. Dole’s voice was in the background.

“She comes in here all the time and she just needs so much. Even without her asking, it’s my job to serve. I need to help people like this young woman and other people who can’t take care of themselves. It’s my calling. It’s my calling because I see that she’s not getting a lot of care at home. She puts a smile on her face and she’s stubborn. Boy she’s stubborn! But when you see her dirty hair and clothes, you just know that she needs people like myself to take the time and just be kind. It’s really no big deal for me to get her food and feed her because that’s what Jesus teaches us. We’re just servants.” 

The camera showed Dole lifting the plastic fork to Constance’s mouth and then the scene cut to Dole’s face outside of the restaurant being interviewed.

The reporter asked, “So what did you think when you found out you were being recorded?”

“I was truly honored to be recognized for my hard work and ability to serve customers. I see a lot of people every day like this woman, who struggle to do basic things like eat and speak and drive their wheelchairs, and I am thankful that Burger Buddy is here for them. She wasn’t able to communicate much with me, so I never got her name, but I want her to know that Burger Buddy is here to help people with the most special needs. I want to be a voice for those that have no voice or abilities.”

The next shot was of a man in a suit shaking Dole’s hand and giving him a pat on the back. Then he was interviewed.

“Burger Buddy values all it’s customers, even those with special needs. Dole Day is a model example for all of our employees to follow. He goes out of his way to make sure those most in need get the help that they need,” said Burger Buddy’s General Manager.

“Does that mean he’ll get a raise?” the reporter joked.

“Absolutely! And a promotion. How could we not reward a man so generous?”


Constance slammed her laptop shut and closed her eyes. Her stomach somersaulted and she felt the urge to spit. Leaving all of her stuff on the table, she bolted towards the bathroom, shoved the door open with her wheelchair, and went to the sink where she leaned her head forward into the basin to vomit. Sweat seeped through her t-shirt as she dry heaved after throwing up what little was in her stomach. She was so thankful that this counter and sink were the right height for her head to fall forward into. If Constance were at home, she would have gotten sick all over her clothes and would have to wait for the rest of the afternoon for April to change. She didn’t anticipate the vomit getting into some strands of her already dirty hair. 

She looked up at herself in the bathroom mirror. Big green eyes pushing big tears out of her eyes. Pale skin. Dirty, frizzy, hair. She didn’t want people to recognize her as the helpless cripple in that viral video. She wanted to disappear. Constance grabbed a paper towel and tried to clean up the vomit in her hair, but she could barely reach it. 

An hour later Constance waited outside the door to the nearest cheap hair salon until a stylist inside spotted her looking in. When Margaret got to the door, she recognized Constance from the Nine At Nine news story, but didn’t say anything. The girl looked like she had been crying. Her hair was clumpy and dirty. It broke her heart.

“Hey, come on in, Sweetie!”

“Please don’t call me Sweetie. My name is Constance.”

“Oh, I’m sorry. Constance. Got it. How can I help you today?”

“I’d like you to shave my head?”

“Shave it?”

“Cut as much of it off as possible. I don’t want to deal with it anymore.”

“But it’s so beautiful, Constance. Are you sure?” She reached out and touched the bun that was the size of a baseball on her head. 

“Please just shave it off.”

Speechless, Margaret headed over to her station. She pulled the chair out of the way and Constance glided into place. Margaret took the rubber band out of Constance’s bun and her hair cascaded around her in clumps. It smelled ripe and felt sticky. The ends of her hair were frizzy and blond, the top was greasy and three shades darker because it was dirty. Something definitely needed to be done, but shaving this head was not what Margaret would choose.

“Why don’t we just wash it and then maybe trim it?”

Constance shook her head from side to side. Her eyes were closed.

“Get rid of it. It’s disgusting. I’m disgusting.”

“Oh honey, you’re not disgusting.”

“Please just call me Constance and please just listen to me. I’m so sick of people not hearing me.”

Margaret picked up her scissors and took a deep breath. 



When she left the salon, Constance felt a chill run up the back of her neck to the top of her head where hardly any hair existed. It was an odd sense of liberation to say goodbye to the most favorite part of herself, but as she headed past Burger Buddy on her way to her apartment, she never wanted to be more invisible. She kept her head down and focused on the cracks in the city sidewalk that she fantasized shrinking herself small enough to fall into.

[Image description: Picture of disabled person in wheelchair at a restaurant of some kind being assisted by employee. Reads SELFLESS ACT at the bottom and ‪#‎News‬ in the top left corner]

Tuesday, March 1, 2016

44 hours per week for life, liberty, and the pursuit of happiness (Part 2 of a weekly sort-of-fiction series)

“You wanted to see me?” Lilianna asked her supervisor who called her into her office at the end of the day.

“I know this was your first day on your own out there, so I was hoping we could debrief if that’s okay with you.” 

“Yeah. Absolutely,” said Lilianna as she took a seat across from Jackie’s desk.

“So let’s start with your first consumer of the day.”

“Constance Mumford.”

Lilianna looked down at her file and frowned a little. She sighed and scanned her notes. Even though she had only visited five clients her first day, her discussion with Constance stood out from all of her other interactions, like a mysterious hair poking out of a lump of mashed potatoes. She went from house to house tense and on the defense; nervous about questions she couldn’t answer; nervous about tears falling out of big doll eyes; and most nervous about sarcastic responses to questions about activities of daily living.

Thankfully, none of the other consumers were like Constance, and that was both good and bad. It was good because no one challenged the assessments. In fact, some of the consumers were actually incredibly gracious for just a few hours per day. It was bad because Lilianna went into homes that showed obvious signs of neglect, and met with individuals who needed way more than the waivers they qualified for could provide.

“Yes. Constance. How’d that go?”

“Well, um, she was a challenge.”

“A challenge? Tell me about it.”

Jackie turned her desk chair towards her computer and pulled up Constance’s information on the screen.

“Constance seemed a bit frustrated about the assessment form,” Lilianna explained.

“She wanted more hours?”


“How many hours did she assess for?”


“Forty-four per week? Why that’s pretty much at the maximum for that program. And she was upset about that?”

Lilianna flashed back to Constance blocking the doorway to her bathroom.

“She says that she takes longer than twenty-five minutes to use the bathroom per day.” Lilianna’s empathetic side took over. “Honestly, twenty-five minutes does seem a little harsh. I use the bathroom like five or six times a day and -“

“Did you tell her that?”

Jackie put her hand up to her brow and massaged it.

“Did I tell her what?”   

“That you found the maximum to be a little harsh.”

“Not exactly?” Lilianna’s voice cracked and she cleared her throat.

“Well, it’s not harsh.” She closed Constance’s file and spun her chair back around to face Lilianna.

“You have to remember, Lilianna, that this is not an entitlement program. We have very limited funds issued for this particular waiver, and they need to be dispersed efficiently. We also need to remember that Constance is under a waiver for the working disabled. She probably makes more money than the two of us combined. She probably can afford to pay for extra bathroom…er…meditation time.”

Lilianna remembered Constance’s duplex. It wasn’t a dump, but it wasn’t the greatest either. It was about seven hundred square feet, with one bedroom and one bathroom. Also, Lilianna had copies of Constance’s income pay stubs in her file. Their incomes were actually pretty close to the same, and Lilianna could barely afford to live on her own. Lilianna shook her head.

“She makes about as much as I do.”

Jackie blinked hard and Lilianna got the feeling that her boss felt her first twinge of regret for hiring her.

"Do you want this job, Lilianna?”

Lilianna felt like she had been instantly punched in the kidneys.

“Of course I do. Of course.”

“Then you need to get a little tougher. That’s all I’m sayin’. There will be many Constances who will try to make you feel guilty and who will try to bully you into changing the rules or giving more than you can give. It’s not your problem. Constance will figure it out. She will do what it takes. If she really, truly, needed more time, there’s no way she’d be able to have gone to school. There’s no way she could work. If she’s really that disabled, she should probably be considering some kind of assistive living facility, group home, or maybe even a nursing home. Visions of Independence is an agency for fighters. It is for folks who can live independently in their communities. Some of our consumers have been babied by mom and dad for most of their lives and have developed a lot of characteristics related to learned helplessness. Don’t pity these folks and don’t feel sorry for them. If you do, I don’t want you here.”

Jackie and Lilianna stared at each other. Lilianna’s eyes welled-up with tears. She was afraid to blink and set them free to roll down her face. She breathed in slow and looked up towards the florescent light above Jackie’s desk. Lilianna thought of Constance, who definitely didn’t seem like the kind of person who wanted pity, but she also didn’t think she belonged in a facility. Maybe Constance was just dramatizing her situation? Maybe it wasn’t that bad? Maybe she was displaying characteristics of learned helplessness and all Lilianna needed to do was give her some tough love?

“I’m sorry, Jackie,” Lilianna whispered.

“Sorry for what? For taking this job? For caring? For letting it get to you?”

Jackie’s switch to a softer, more motherly tone, relaxed Lilianna.

“I’m not sorry for taking this job. I guess I’m just sorry for…” Jackie handed Lilianna a tissue. She blew her nose and blotted her eyes.

“Do you want me to finish Constance’s assessment? I won’t put up with any crap from her.”

Humiliation washed over Lilianna at the thought of her boss not thinking she was tough enough for the job.

“No! It’s totally okay. I can finish it.”

“Well, let me know if you want me to call Constance with the results of the assessment. Sometimes they can get irate when they hear about their co-payments, or when you have to negotiate the hourly wage they pay their attendants.” Jackie spun her chair around to look back at Constance’s file. “It’s looking like Constance is going to have to pay a 7% co-pay, which will be approximately $154 per month.“

"And her attendants’ wages?”

“Our program gives consumers the ability to pay $8.05 per hour for their attendants.”

Lilianna’s mouth dropped open a little. Six years ago, when she was in high school, she made $9.00 per hour working at Wendy’s.

“Wow, that’s…”


“How does anyone find people to work? Please tell me they get benefits.”

Jackie shook her head no. “Nothing. No overtime. No retirement.”

Lilianna sat stunned. How would Constance even find anyone to work for her? Maybe she would have Jackie make the call to Constance.

“Jackie, how - why - does anyone do this program?”

“I’m sure they figure it out. We just do the math. Sure, our consumers, especially the entitled ones like Constance sometimes complain and write their congressmen, but the bureaucracy gets them nowhere fast. When the complainers get feisty, I’ll give them the name and number to our local I.L.C..”

“What’s our I.L.C.?”

“Our Independent Living Center. It’s a peer-led disability advocacy organization. These opened up all around the country in the eighties. A lot of them get funding from government sources now, so you know how that goes.”

“Will they help her?”

“Some do. A lot of time if you give consumers the number to the I.L.C., it will at least not make you look so powerless. Plus, you can count this on your outreach log.”

“Well, thank you so much, Jackie. I’ll definitely do that then,” Lilianna said and closed Constance’s file.

“And just let me know if you need me to make the call to Constance. I’ve been doing this for much, much longer than you have and don’t put up with whiny and spoiled behavior. You can shadow me if you wish. Tomorrow, I’m going to head over to the house of probably our most demanding and obnoxious consumer. She’s big into ADAPT.”


“That’s the activist organization for people with disabilities. The one on the news sometimes. There’s usually this guy in his power chair with a big gray afro. You’ve heard of the slogan, ‘Nothing About Us Without Us’?”

Lilianna flashed back to her chapter on disability history from college.

“Could I also tell Constance about ADAPT?”

Jackie’s mouth gaped open a bit.

“Just when I think you’re getting it, you ask me a stupid question like that,” she laughed. “Absolutely not.”

“Okay. I just wasn’t -”

“Don’t worry about it. Forget I mentioned it. But no, please do not send her to ADAPT.”

“Got it.”

“Now let’s talk about your other visits today.”

Later that evening, Lilianna finally made it home to her small apartment on the south side of the city. She kicked off her heels as soon as she walked in the door and flopped fast and hard onto the sofa for a few minutes until she remembered that she had to pee. When she went into her bedroom, she saw her birth control pills resting near the edge of her dresser. She smiled and thought of Constance.
As she peed, she thought of Constance.

As she wiped her ass, she thought of Constance.

As she changed into her pajamas, she thought of Constance.

As she prepared her dinner, she thought of Constance.

And that night, as she tossed and turned in bed, she thought of Constance.

Image Description: A screen-shot artifact of a co-payment schedule for a person who receives personal attendant services and is working with an income that exceeds 300 percent of Supplemental Security Income. The co-pays range from zero dollars owed if a person makes up to $2,199 to 100% owed if the person makes more than $8,055 per month in net income.

Tuesday, February 23, 2016

44 hours per week for life, liberty, and the pursuit of happiness (Part 1 of a weekly sort-of-fiction series)

Lilianna grabbed the company laptop out of her leather briefcase and blew her nose. She was early for her first appointment and decided to review her notes before knocking on the door to the duplex that sat one hundred feet beside her. She had to pee. She always had to pee when nervous, and since this was her first day on the job as a case manager for Visions of Ability, she knew that she was probably going to spend half of it in the bathroom. She gazed longingly behind her at the package of Depends undergarments in her Honda Fit’s backseat. Those were meant for the next consumer on her list to visit today. She was tempted to grab one out of the package, but Lilianna guessed that it probably wouldn’t be too professional or comfortable to spend her morning peeing in a diaper. She would have to probably just woman-up and ask this first consumer if she could use her bathroom.

The consumer, according to the paperwork and her boss’s notes, was up for her annual reevaluation of personal care attendant services under a state-funded Medicaid waiver for working adults. Well, that’s pretty cool, Lilianna thought. This one has a job. Maybe she works at one of those workshops where people with disabilities get paid a few dollars an hour to put together binders or wrap plastic utensils? Oh wait. Lilianna scrolled down the page a bit more. This one has a, “progressive, genetic, neuromuscular disease”, “Spinal Muscular Atrophy”, with “normal intellectual functioning”. The doctor’s letter stated that the “consumer” was “non-weight bearing”, had “40% vital lung capacity” and “required full assistance for most activities of daily living (dressing, transfer, positioning, grooming, toileting, meal preparation, laundry).” Man, she thought. She can barely breathe or move. Guess she ain’t working in one of those workshops.

The alarm on Lilianna’s phone went off. In two minutes she would need to be at Constance Mumford’s front door. Right on time. This was one of Visions of Ability’s consumer satisfaction promises. Her boss had mentioned to her that consumers complained in the not so recent past about case managers showing up thirty-minutes to four hours late to meet with clients.

“I don’t really get it,” her supervisor confessed, “it’s not like these people have much going on in their lives.”

Her supervisor explained that most of the consumers on Lilianna’s caseload were elderly and some were even “vegetables". Lilianna looked down at her lap when her boss said that. This went completely against her graduate thesis on Person-First Language in Social Work. She was kind of surprised that the director of Visions of Ability could even utter the word “vegetable” in front of a new case manager.

Lilianna gathered her briefcase and made sure that the sixty-page manual and packet of forms were included. She needed to make sure that all this paperwork was signed within the hour. Lillian figured she’d spend about ten minutes making small talk, thirty minutes going through the packet, and maybe twenty minutes or so doing the assessment.
Knock. Knock. Knock.

“Hold on!” The voice behind the door was strained and had a bit of a phlegmy gurgle to it. Lilianna had an urge to clear her throat. She heard a lot of commotion.

“Do you need help? This is Lilianna Steck from Visions of Ability.”

“Hold on!” Scraping noise. “Dammit! Okay! Yeah, come on in.”

Lilianna grabbed the door handle and held her breath in anticipation. The urge to pee came back with a vengeance. The door creaked open and before her sat a person she recognized.

Her first thought was Sally. Sally was an acquaintance from high school who died a few years before. Sally was a Jerry’s Kid.

But this girl wasn’t Sally. This was Constance Mumford, who sat upright in her power wheelchair wearing a pair of cut-off jean shorts that showed off her pale bony legs, and a thin baby blue t-shirt that showed off her pale bony arms. Her gorgeous mane of thick, curly, long hair and eye-makeup made her think of some kind of beautiful, doll-like, bobblehead. While her high school friend, Sally, was very conservative in appearance, Constance had a nose stud and a wheelchair heart tattoo on her lower forearm. Despite some differences in style, Constance’s frame and movements were identical to Sally’s. They could have been sisters.

She entered an open living area that included a small kitchenette. The living area had a big window, which faced the street. Constance’s desk and laptop sat under the window and next to a huge bookshelf. Lilianna instantly recognized a few of Constance’s textbooks on counseling techniques. When she looked up from the shelf, she saw two framed degrees. The master’s degree was from Lilianna’s alma mater.

Lilianna extended her hand forward and Constance just looked at it and smiled. Constance leaned over a bit and thrust her left hand forward using her right hand to steady it. She was poised to shake hands, but Lilianna would have to do the work to make it happen. She did. Constance’s hand felt boneless and soft, but the determined look on her face conveyed nothing boneless or soft about her character.

“I’m Lilianna Steck.”

“I’m Constance. Do you want to -”

Hey, I’m so sorry about this, but can I borrow your bathroom?“

"Oh, yeah, sure. You’ll need to go through the bedroom. You may have to move the shower chair out of the way, but go for it." 

Constance spun her wheelchair around pointing it in the direction of where to go.

Lilianna thanked Constance, put her briefcase on a futon, and headed toward the door. The first thing she noticed was that there wasn’t a door on the bathroom. It had obviously been modified to fit Constance’s equipment. In order to get privacy, she had to shut the main bedroom door. Constance’s shower chair sat covered by a wet towel. The cupboards in the bathroom had dents and scratches all over them. Not much room for storage existed. As Lilianna peed, she noticed a packet of birth control pills on the dresser in the bedroom and a nebulizer on a shelf next to a twin-sized hospital bed. Sex and breathing. Similar priorities, she thought. Makes sense.

Pulled up to a fold out table in the kitchen area, Constance looked up and smiled as Lilianna came out of the bedroom. "Shall we do this here?”

“Let’s.” Lilianna grabbed her briefcase with the paperwork and her laptop and carried it over to the table with a plastic chair. She sat down. Her mind went blank for a second and then she remembered to build rapport. “Thanks again for letting me use your bathroom.”

“Sure thing. Anytime. Would you like something to drink or eat? There are some peanut butter cookies over there on the counter.” 

Constance turned her power wheelchair in the direction of kitchen.

“Oh, no thank you. Visions won’t allow me to accept food or drink from consumers. Plus, I have a pretty severe nut allergy.”

“Oh, that sucks.”

“It’s okay. I’ve just had to learn to adapt over the years, but I’m sure you get that,” Lilianna smiled bravely like she used to for the doctors.

“Yep, we’re exactly alike. So how long do you think this is going to take?” Constance asked and looked up at the digital clock sitting on her fridge.

“About an hour. We have some paperwork to fill out; I have to review the rules on the Consumer Directed Services option; and then we do our needs assessment.”

“Oh, okay, the woman on the phone said it would take twenty minutes. I’ll have to text my attendant and let her know to wait.”

“I’m sorry. I’ll try to rush through this.” She could feel Constance’s frustration and Lilianna wondered who at Visions told her that it would take twenty minutes. Screw rapport building. Lilianna grabbed the paperwork and they quickly went through the preliminary stuff. A lot of pointing and signing and pointing and signing until they got to the emergency back-up form.

“Okay, so here you need to list three emergency contacts to call if your attendant doesn’t show up." 

Lilianna pointed to the area on the form where the consumer was to write in her contacts.

"Wait. I thought that this is consumer directed?”

“It is.”

“So why do I need to tell you who my emergency contacts are?” Constance looked irritated and Lilianna honestly didn’t prepare for the question. She was told that some people may not have emergency contacts and that was a good sign that they wouldn’t be the right fit for the consumer directed model, where consumers hire, manage and fire their own employees, but that wasn’t the question Constance was asking.

“Do you not have emergency back-up?”

“Is it your business if I don’t?”

“This form is required by the Medicaid waiver program. If you do not have three back-up contacts, you may not be a good candidate for this program and -”

“I have back-up. Of course I have back-up. I’m sorry, but it seems futile to have to explain my plan for back-up if nothing is going to be done on your end if I end up in an emergency anyway since it’s consumer directed. It just seems a bit silly and Big Brother like - that’s all. Sorry. I’ll give you the contacts.”

“You can just put your parents names down or siblings,”

Constance laughed. Her voice twisted like her spine. “My mommy and daddy?”

Lilianna felt the urge to pee again. “Well, whomever.”

“My parents live two-thousand miles away. I moved here for graduate school. My sister is still in high school and she’s just as crippled as I am, so I doubt she’d make a good back-up.”

“I’m sorry.”


Lilianna just stared at her. What was she sorry for? Maybe it was because Constance’s parents were so far away and she was obviously pretty feeble to be without support. Maybe it was because her sister also had a disability. That must have been so hard for her poor parents.

"I’m sorry that you are here without your family.”


“Most of our consumers have support from their families.”

“Like what kind of support?” Constance asked.

This back and forth was starting to make Lilianna dizzy and feel defensive.

“Well, like if there’s an emergency. A family member can get them out of bed, help them eat, that kind of thing.” Lilliana felt like she gave the right answer, but Constance didn’t look pleased.

"Is that the same support you get from your family as a woman in her twenties?”

Lilianna sat dumbfounded. Why was this chick always throwing questions back at her?

"No, but I don’t have a disabil— I mean a physical challenge.” She knew that Constance probably wouldn’t have appreciated the political correction like her professors would have.

“So you’re saying that that’s my family’s job - to be enslaved to do my care for the rest of their lives?” Constance’s doll-eyes got big.

“I’m not saying that!” Lilianna’s voice cracked.

Constance smiled. She pulled out her phone and motioned for the form.

“Look, I’m sorry. I’ll list three friends. Let’s just get this done.”

Lilianna was sweating. This very fragile girl in front of her intimidated her. She fumbled a bit as she went through more forms. They finally got to the nitty-gritty of the paperwork after a few minutes. It took time for Constance to write the contacts on the form. It seemed to require every inch of her body to move her pen along the paper. Her breathing even changed. Constance’s handwriting was labored, messy, and Lilianna knew that this wasn’t because she was careless or unable to make words. She was just weak.

“So now I have to ask you a series of questions about your activities of daily living for this formula sheet.”

Lilianna pulled out the form and Constance’s facial expression went hard again.

"Formula sheet? There’s a formula?”

“Yes, a formula. The state has strict rules pertaining to how much care someone can receive in the home.”

“What about my doctor’s recommendation?”

Constance pointed to her file that had copies of all the paperwork she had given to Medicaid.

"Well, most doctors want to give their patients everything and the kitchen sink.” Constance blinked and immediately Lilianna could feel the claws come out.

“So you’re saying that the State knows more about my care than my doctor who I’ve seen for years?”
Lilianna knew where this was going.

“Look, Constance. I don’t make the rules, okay? I just have to get this paperwork done. There’s no point in arguing.”

“I need significant hours,” Constance’s strained voice rose and shook. “I could die without significant hours!“

"Well, if you need that many hours how can you work? How can you live in this apartment?”

"You seriously just asked me that. How dare you suggest what I think you’re trying to suggest? Do you see the degrees from Cornell and Rice on the wall behind you? Do you think I deserve to be put in a nursing home? Don’t you get it?”

“I’m sorry. It’s none of my business.” Lilianna wanted to cry and pee at the same time.

“Just ask me the first goddamn question.“

She read the first question on the assessment form that was both in English and Spanish.

"Do you have any problems taking a bath or shower?” Lilianna asked.

“I do. I can’t take a bath or shower independently.”

“Do you shower everyday?”

“I do. Do you?”

Lilianna ignored her question and filled in the formula. Seven days per week, forty-five minutes per day.

"It takes me longer than forty-five minutes in the shower. It takes me at least an hour and fifteen minutes, and that’s on a good day.”

“I’m sorry, that’s the maximum.”

Constance rolled her eyes and then stopped making eye contact for the next few questions. She answered with a flat disassociated tone, and Lilianna awarded maximum minutes based on her answers.

Thirty minutes per day to get dressed.

Twenty minutes per day to eat.

There were no minutes for grooming.

“Wait. You can’t give me minutes for teeth brushing, shampooing, and combing my hair?”

“As I said, I don’t make the rules.”

“How long does it take you to do your hair in the morning?”

Lilianna thought about the time she spent straightening her hair and putting on her makeup. She was also a religious flosser.  

“It takes a while,” she answered honestly, but she didn’t know exactly how long because she never had to count the minutes.

“So according to the State, I am just supposed to have bad breath and uncombed dirty hair?”

“Let’s move on.”

Constance didn’t complain about the thirty minutes for shaving, oral care, and nail care per day, or another forty-five minutes for routine hair and skin care.

“What’s the difference between routine hair care and combed hair? And what’s the difference between brushing my teeth and oral care? Who the hell came up with this stupid form?”

“I really don’t know.”

“Well, they suck.”

“Do you have problems getting to the bathroom and using the toilet?”

“What do you think?”

Constance smiled. Lilianna put in the max time of twenty minutes per day.

“Wait. Wait. Wait. Hold up. Twenty minutes! I get twenty minutes to use the bathroom?”

“Yes. That’s what it says. That’s the maximum”



“How many times per day do you go to the bathroom?” Constance scoffed.

“I go around six times.”

“I go three if I’m lucky, but I’d like to go six. And each time it takes me at least thirty minutes. Do you know how much it sucks to have to hold your pee for eight hours at a time? Can you imagine taking a shit on a schedule? I’m not telling you this to feel sorry for me, but this is fucking ridiculous.”

“It is ridiculous. I’m sorry, Constance.”

“Just call me Incontinence Constance.”

They both broke into hysterical laughter.

“I have some Depends out in the car!” Lilianna blurted out as she cried and caught her breath.

“Shut up!“ They both looked at each other and their smiles stopped. Lilliana wiped the tears from her face with the back of her sweater sleeve. The guilt returned like a heavy blanket being thrown at her from across the room.

By the time the needs assessment concluded, Constance had a total of 2620 minutes of care per week, which added up to approximately forty-four hours.

"So there it is. You have a budget of about six hours per day,” Lilianna sighed. Her bladder was screaming for relief.

“What about turning at night? Is that on the list?”


“Yes, you know, moving in bed.”

“There are no hours for turning.”

“I can’t move. I’m not sure if you haven’t figured that out yet, but I can’t move at all. The doctor even wrote it right there if you don’t believe me.”

She pointed at her stack of documentation.

“Oh, I believe you.”

“So, you realize how dangerous this is to not be able to move at night? The pain, the cramping, the bed sores -“

“I get it.”

“No. You fucking don’t.”

Looking at Constance’s face, her doll-eyes widest of all with tears welling up in them, made Lilianna wish she never took this job. She wished she could quit right then and there. No one told her that this would be her fate at Visions of Ability, giving people like Constance only twenty minutes to use the bathroom per day and no help at night.

“How do you handle not turning right now?”

“Maybe I don’t handle it. Maybe I sleep in my wheelchair every night. Maybe I invite some guy over from Craigslist and do whatever it takes to get turned at night. Frankly, it’s none of your business because nothing would change if it were your business. The only way this is going to change is to end up so ill from neglect that I end up hospitalized. Don’t you see how messed up this is?” Two thick tears fell out of her doll eyes. “Don’t answer that. Where do I sign?”

Lilianna didn’t know what to say, so she just handed her the needs assessment form and Constance approved the forty-four hours per week. She really had to pee again.

“Constance. I’m so sorry, but -”

“It’s okay. It’s not your fault. I’m sorry for getting so angry. I’m just really-“

“I’m so sorry, but I have to use the bathroom again,”

Constance turned to stone.

“So do I.”

“Would you mind if I…”

“I would.”

“I can’t use your bathroom?”

“Nope. Sorry. You’re only allowed to go once every eight hours,” Constance said and wheeled over to the bedroom blocking the door with her power chair.

Lilliana gathered her papers and laptop, trying desperately to avoid eye contact with the consumer.
“Thank you for your time,” she said to Constance.

“See you next year if I’m still here,” Constance voice cracked.

When Lilianna got to back to her Honda Fit she about collapsed onto the ground. She could feel Constance’s eyes staring at her from the living room window. She opened the back door to the car and threw her briefcase onto the backseat. The Depends undergarments fell onto the ground. Lilianna left them behind and drove away.

Image Description: A picture of a form titled, “Needs Assessment Questionnaire and Task/Hour Guide” filled-in by hand with blue pen. Many of the questions from the story are listed on this form with the total minutes and hours reflecting the total minutes and hours in the story.