Letter to the Editor: Disabled resident highlights issues with Carbondale living spaces
July 11, 2022
The following article is a first person account by former SIU student Dean Reece, who is concerned about accessibility on campus and around the Carbondale community for people in wheelchairs. In part because of a high fever and other complicating factors his mom had during pregnancy, Dean was born with cerebral palsy.
He also has an invisible disability, auditory processing disorder, which is not the same as hearing loss and is frequently misdiagnosed as ADHD or autism. It can result in mishearing, difficulty comprehending speech when there is competing background noise and slowness to respond to speech or other auditory stimuli.
For Disability Pride Month, Reece tells his own story as a way to draw attention to the difficulties faced by people with disabilities:
Living by myself should not be an overwhelmingly complex task for me to accomplish in the 21st century, but it is. You see, I live out of a motorized wheelchair these days. I have never been able to walk normally. During my childhood, I used a wide four-wheeled walker to get around. Using the bathroom and meal preparation have never been easy tasks for me to complete.
The fact is, how I struggle to simply use the bathroom is downright gross and disgusting to most people. It has done a number on my social functioning and others’ perceptions of me.
My problems with housing were not really solved until I was 22. I’m 36 now.
Throughout my childhood in Nebraska and Minnessota, I was raised almost exclusively by my father. We moved four times while I was growing up. At each location, my father would do the bare minimum he had to in order to make sure I could enter our housing unit, but nothing more. His philosophy is that I needed to live without help.
We eventually moved here, to Mount Vernon, Illinois. Our complex did everything possible to ensure my ease of living. They gave me a ramp at the curb, another ramp to get inside the apartment and a key lock on the patio door. At this time, going to the bathroom was nothing but a death trap. All management could do to accommodate my needs in this ridiculously small bathroom was to put different hinges on the door to allow it to open wider.
The problem no one saw coming was going into the bathroom is a completely different motion than coming out of the bathroom. Whenever I was finished, there was absolutely no room whatsoever for me to turn around in my walker. My dad would always have to help me. If he was at work on my days off school. -my god it was scary. Some days I would bear with it and others I would soil myself on purpose because my sanity couldn’t deal with taking what felt like an eternity just to exit the bathroom.
Our next stop right here in Carbondale wasn’t all that spectacular either. Here, the only difference was I had just slightly more room to maneuver my walker in the bathroom but that was all.
In high school, I moved to the home where my father and stepmother still live today. When they purchased the home in Spring 2001, it was in no way whatsoever equipped for a person with a mobility impairment. As soon as they got the keys to the house my father made the house walker friendly only. Yes that’s right I said “walker friendly only”. My father built a really long wheelchair ramp that was really more like out of control downhill skiing at 100 miles an hour with no breaks.
The bathroom door was impossible to access from the hallway. In order to give me a usable bathroom space, my father installed a sliding pocket door in my bedroom. Nothing else was different here except for the fact that my father and step-mother wanted me to do some of my own meal prep in not always the safest of ways.
To say it was scary living that house was a complete and total understatement. I would spill glasses of orange juice frequently because the movements in my hands were so jerky that I could not hold on to pitchers or cups without spilling them. Sometimes, even getting things out of the refrigerator would make me feel like I was going to keel over dead. The only relief I really got in this house was the two styles of walkers I used had seats on them so I could sit if I were making a peanut butter sandwich or waiting for eggs to finish cooking on the stove. And when I stove, I mean regular stove where I had to reach all the way back to turn the burner on. It’s a miracle to say I never got seriously hurt.
During my childhood you could say I had very few rules to follow accept for the fact that I was not allowed to utilize my wheelchair inside the house at all except just before getting on the bus in the morning and sometimes when coming home from school, my stepmother would allow me to ride wheelchair inside the house but only just past the entryway. That was only mainly if there was a large ice or snow event outside. It was not uncommon for her to leave my walker at the end of the wheelchair ramp or even at the end of their homes’ long driveway.
After high school, my next stop was SIU Campus Housing. Here, access to my wheelchair was the least of my concerns. Gravity was a far greater concern. You see, not many people think anything other than easy to clean tile because it saves on long term maintenance costs. Well, not so fast.
I’m just going to tell you this straight up. During the day, when I was in my wheelchair one never saw what an unsafe deathtrap my dorm room actually was, because well, civilized individuals would not dare to come out of their home living units without being covered up. There are more safety hazards to be aware of when it comes to a mobility impaired person doing dressing and other daily self care tasks than the average person on the street even realizes or even cares to acknowledge, to be brutally honest.
When I first came to SIU, my family made me feel it was outright wrong to accept any kind of assistance from an outside care attendant. Let’s just say I found out very quickly that plan was not going to work at all.
Thursday, August 25, 2005 is a day I will never forget as long as I live. The evening before I had forgotten to use the bathroom before falling asleep. I was just straight up exhausted. Eight days of no assistance had finally caught up to me. On this infamous Thursday morning, with a bladder spasm from hell, I remember waking up at approximately 7:30 that morning feeling like I had to urinate insanely fast. I waited a short time for my spasm to subside but it did not. By 8:00 I had urinated all over the bed and when I attempted to get up and go to the bathroom and get cleaned up I slid right off the bed onto the slick tile floor.
I remained stuck fighting for every ounce of strength I could, to get to myself off of that damn tile floor. Finally, by the grace of god, I got up unassisted at about 1:00 that afternoon. Meanwhile, during the same five hour time frame I was attempting to pull myself off the floor, staff from the Disability Support Services office on campus was trying to contact me about some problematic class issues. Staff attempted to contact me both by my cell phone and my room phone but I couldn’t reach either. DSS staff finally sent a care attendant to help me just after I had gotten myself up off the floor.
The attendant helped me get cleaned up and presentable for class. It was however not in time for me to make it to my two afternoon classes on time. I was not happy to put it mildly. Why no one from Campus Disability Support Services did not call 911 for me for a wellness check that morning is beyond me. I had three more of these falls in the span of a week. By this point it would be safe for one to assume straight up I was feeling every emotion in the book except for that which I should have had, which is being a confident young man.
Now, I want to provide a few more details about the challenges I was facing during the five hour window of time I was hopelessly stuck on my dorm room floor. Straight up I was naked. Not by choice however this is the safest way for me to get around in private places where no other human assistance is around. Long pants and shorts alike can become a tripping hazard if they fall down to my feet and not only that but reaching behind me to pull my pants up was impossible to do without the serious threat of a fall because I would get outside my center of gravity. Whenever I could just roll, turn and sit it would make my toileting go much more efficient.
It wasn’t only the three falls I experienced within the span of that first week but I had numerous occasions throughout the course of the school year where I was very unstable getting dressed and once I even slipped on the floor during the spring semester that my dad had to help me get out of. I knew at that time I had to get an apartment with carpet. That was not going to be an easy task however, not by a longshot!
Knowing I needed to get out of campus housing as fast as possible, I applied to Cornerstone Place Apartments here in town. They had an apartment I really liked and almost moved into. However my father expressed a concern of me being a fall risk. Management Immediately rented that unit to someone else. My father quickly said he misspoke but it wasn’t in time to avoid one more nightmare in campus housing.
By the end of the eight week summer term, I had to be sure this was it. As week four got underway, I had let go of the two care attendants I was using at the time because of violation of agency rules. I was then switched to another agency where the staff there did not understand students were able to live on campus and take courses during the summer. This was an agency that primarily catered to the needs of senior citizens. I would have workers sent to me in the early afternoon hours way past my 9:50 a.m. start time for class. Thank god for my over, above and beyond nice English teacher, who finally took it upon herself to call and explain to the supervisor I was on the verge of failing this English class, that I had a perfect A+ in by the way, all because I could not get to class on time because of circumstances outside of my control.
Moreover, it is just really disturbing to me that our society as a whole only thinks of design issues being a one style of living fits all because it’s simply not true. By this point I knew there was no safe solution that would allow me to safely eliminate my fall risk. Given the issues I had finding responsible attendants and my high fall risk, I told my father “If you want me to come back for the fall term you will give me my bedroom back.” He agreed and I stayed there until October 13, 2006, when I was at last able to settle into Cornerstone.
Once living in Cornerstone, I was met with great relief. I no longer had to be concerned with slipping on unfriendly tile floors because I finally had carpet. I did experience accessibility challenges in other ways. For starters, the bathroom door opened in such a way that when opened fully and completely blocked me from being able to access my bedroom. Let’s just say I had to use extreme caution when going to and from the bathroom if I was on my walker not because of the floor but rather two doors were in my way.
Many mornings during my 18 month stay there, I would urinate on the floor because it was too stressful to hold during all the sharp turns that were required for me to safely access the bathroom. It stinks after awhile but at least with the carpet I did not have to be concerned about losing entire days to slippery floors anymore.
At Cornerstone, my main source of difficulty was falling during the transfer from my chair to the toilet. This sporadically throughout my first year then accelerated after my wheelchair was replaced with a much taller model and continued until I moved to my current apartment on April 2nd, 2008. I had a total of three different independent living experts tell me my living quarters were not set up according to ADA guidelines for my disability. Even though my unit had its accessibility drawbacks, I still really liked it and was going to do whatever I had to to make it work.
However, I soon realized even my best attempt at self-determination was only going to go so far. The evening of Friday, November 16, 2007, is a night I will never forget as long as I live. At about 9 p.m., I had a sudden urge to urinate. This urge was so sudden that I was not all thinking about what I was doing. When I landed all hell broke loose. My back hit the back of the toilet so hard that it cracked the upper reservoir. At first I thought it was just a little water on the floor. I was wrong. By the time my father showed up to get the mess as cleaned up as possible, the apartment was flooded from the bedroom to the living room. Once the toilet broke I knew I had to find a different apartment. However with so few acceptable units in town, where was I going to go?
I had applied for my current unit three times previously. In 2005, I applied when I first had serious problems in dorms but was unable to give an exact income figure for rent due to a complicated college fund. In 2006, I applied again but was told college students had to be 24 according to their guidelines at the time. This rule is absolutely goofy and makes no sense to me whatsoever. In the meantime, I was still having intermittent issues with caregivers and falls. I knew this environment would in a very major way take care of about 98 percent of those issues for me. With some strong persistence from my case manager, I agreed to give it one more try.
At the end of October 2007, we sent in an initial application for me. A month later the company sent us a follow-up application. We sent that back in as quickly as we received it. After that it became a long waiting game. After multiple unreturned phone calls from December 2007 into January 2008, my case manager sent management in Minnesota a certified letter regarding concerns and frustrations over two and a half months of no response to my application.
They responded immediately. On January 25th, I learned they had an immediate opening. Exactly one week later on February 1, I toured my current apartment exactly one day before my 22nd birthday. This place I now call home was perfect in every way minus one little detail. There was no grab bar next to the toilet. Was I going to relive the broken toilet scenario all over again? NO! I let the property caretaker know the grab bar would need to be installed by the time I moved in. I also let management in Minnesota know about the error. They assured me that it would be taken care of by the time I moved in. Well it wasn”t!
March 19th, 2008 was my original move-in day. All I wanted to do was get signed in, get my keys, and get on to an easier way of life. Instead that day was a very bumpy ride. It all started at 10 that morning when I arrived on site to sign the move-in paperwork. The property caretaker definitely told me he would not install the grab bar next to the toilet and told me I would have to pay for any costs associated with a damaged toilet.
Next he told me he had heard stories from virtually every resident in the building concerning inappropriate nudity from my past. He then proceeded to tell me he was so concerned about me he did all he could do to deny my acceptance to the building. I was alarmed by his actions but not discouraged. I waited a few more minutes for my move-in paperwork to arrive. It did not arrive until about two in the afternoon when I received three frantic voicemails in a row telling me to get back before 3 p.m. because he was leaving at 4. I quickly hurried back.
When I got there it was nothing more than a circus show of discontent about me moving into the building. One resident even had all my private information right at his fingertips. By this point I was seriously alarmed and rolled away. When I got back home, I immediately called my indepent living caseworker. I was unable to reach her but left a message concerning what happened. I briefly spoke with another social worker. And then, when I got off the phone, I experienced the most dangerous fall of my life.
I had another urgent bladder spasm. When I stood up and touched the toilet hand rail which I had been using since 5th grade, it disengaged from the toilet and I flew across the bathroom so fast and with such force I smacked my head against the hard porcelain of the bathtub so hard I literally thought I was going to have a traumatic brain injury. I immediately called my caregiver to help me up but he was busy. I spent that entire evening on the floor from about 4:15 to 11:00 thanks to poor design. The next day I got hold of my Independent living caseworker and filled her in on what happened. We made arrangements at 3:45 the following Monday. I promptly told Minnesota to call me back at that time or the deal was off.
On Monday, I met with my case manager and told Minnesota exactly what happened. Minnesota assured me the caretaker’s actions were completely unacceptable and my case manager arranged to go with me and sign my lease as the Center For Independent Living had run-ins with this individual treating other tenants they work with in the same way. I signed my lease the following Monday and moved in 2 days later on April 2nd.
However, the grab bar situation was far from over. Over the next week, the caretaker gave me one excuse after another as to why he could get the grab bar installed. Either it would be “I don’t have a stud finder” or “I have a metal stud not a wood stud finder.” He finally told me he would be unable to install the grab bar altogether and that I would have to stop using the community bathroom.
Faced with another round of threats, I again called Minnesota and my case manager. His supervisor was so ticked off by this point she told me herself she was going to find someone to do it. Friday morning, nine days after moving in, I finally had a proper grab bar installed. Oh and by the way within a month our property caretaker thought I was one of the best tenants in the building.
This is where I still live today. You see what no one cares to understand is that, when environments are designed properly, I can actually be very independent with minimal assistance from other people. Why do you ask? The answer is simple! From the moment I moved here back in 2008 I was no longer falling every other time I had to use the bathroom because my bathroom is actually designed for direct pivot transfers to and from the toilet.
Throughout a large part of my 14 years here, I have been very blessed that I have been able to lead a mostly carefree lifestyle in terms of falling and losing entire days and evenings being stranded on the floor for hours at a time. That’s not to say my life isn’t stressful in other ways. It just means my current apartment allows the least restrictive amount of barriers toward my goal of living the healthiest I can that other units can not match because of layout.
The only real problem I’ve had with this unit is getting others to understand that I can be functionally independent in it. On October 22, 2019, I was struck by a car on South Wall Street coming home from the city council meeting. I broke both legs in multiple places. For a good three and a half months it hurt to sit up or even move a single millimeter without being in agony. If you thought that was the worst of it, think again. When I was in Herrin Hospital’s Acute Rehabilitation Program my rehabilitation doctor had all hands on deck assisting us patients with therapy goals in order to aid us in being the best we could be. On Thanksgiving he went as far as to tell me I was no longer allowed to use urinals or bedpans as means of going to the bathroom. As far as he saw it when I had to go to the bathroom at all “You are going to use the toilet.” End of Discussion!
That is not unfortunately what followed exactly one week later, when, for insurance reasons, I had to transfer to a nursing home. The next 100 days that followed was nothing more than a torture chamber of complete misunderstanding over what my diagnosis and the assistance I needed when it came to using the urinal. Occupational therapy would explain that I had very limited use of my left hand and would need help positioning the urinal so it did not spill but it fell to mostly deaf ears. Each time I would have an accident, staff would drill me on how I used the bathroom at home. Each time I would tell them the same answer that I stood and pivoted from my wheelchair to the toilet but no one believed me.
From the moment I got there to the moment I left, all the staff cared about was my ability to use the urinal. Not only that, but when I did have to have a bowel movement, the staff would use this really old sit to stand machine that would lift me from my wheelchair to and from the commode and bed most of the time. But almost constantly broke down or some other way out of order. When staff had to transfer me to the commode I would have to wait for the better part of an hour to get safely transferred. This went on for all 100 days of my stay. I swear people incarcerated for the most heinous of crimes get treated way better on a daily basis than I ever was in that facility.
AND then came March 2020, which for me meant one thing and not exactly talking about COVID here: It was time for me to go home. I’m puzzled to say the least about how that lined up exactly with stay at home orders but it’s exactly what happened to me. And guess what no one had and any sympathy for me at all. I had two workers from before my accident and one that got signed up just before I went into the hospital.
When my time was up, it was up, I wasn’t exactly looking forward to going home in such bizarre circumstances but I had no choice. Three months in, I had my entire sense of self worth in the toilet. When I got home one worker I had was her own and her family’s safety was a concern for her so she left right away. Another worker worked real well for me for just over a month and disappeared. It took two months for me to get in touch with my other aid and until June 30 before my most stable aid’s paperwork was official to work for me.
As it turns out toilet transfers over the past two years have been the least of my concerns inside my apartment and at my church. Elsewhere in public, it is a completely different story. Before my car accident I was 110 percent confident I could use almost any bathroom within the city of Carbondale or the SIU Campus without major fear of a fall. Now, I have to use extreme caution only to use toilets that match up with the height of my wheelchair.
Generally that means any commercial toilet that is attached to the wall and not the floor is off limits for me to use safely. In the two years since returning home I’ve experienced great difficulty in finding bathrooms outside of my home that are safe for me to use in spite of what the ADA or law says about such accommodations. My rule is simple. If I cannot transfer to a toilet, do my business and be finished in around 10 minutes it is not a user friendly bathroom and is therefore off limits.
I’ve probably had somewhere close to five close calls each in the last two years getting back into my wheelchair and one actual controlled fall because of exhaustion. Ever since my accident my feet have been unable to touch the floor because of how my bones healed.
Basically when I’m finished using a public bathroom I have to use every ounce of upper body strength I have to force myself back into my wheelchair. At times this process has taken me close to an hour to complete.
People often ask me where my attendant is when I go out in public even if I’m in no need of assistance or if I need help with something very simple like removing bags off the back of my chair. I explain to them my attendants’ services are not needed 24/7 because I have strategies to self assist for the most part during the day. Plus, what most in the general public are not aware of is that it is against policy of the Home Services program for me or any customer to have our workers on the clock outside the home unless the worker is at a doctor, physical, occupational, or speech therapy appointment. The catch here is the worker is only allowed to be on the clock during the time of instruction with the provider, not for time spent in the waiting room.
In my specific situation, I’ve functioned very well with minimal assistance from care attendants over the almost 17 years I have been living independently. My most overwhelming obstacle in all this time has been getting caregivers to understand that. My biggest piece of advice for persons with mobility impairment is to have a clear grasp of the lifestyle you want to live. If you don’t the system will drive you straight into the drink with no way out. I promise you there is no social distancing either from illness or other people in a nursing home.
My final thoughts here are as follows: Number one – you cannot control what a mobility impairment does to you. All you can really do is keep an open mind to learn and live as best you can with it.
Number two – you can not control how others will respond to you. The best piece of advice I can offer here is to pay close attention to how a potential attendant interacts with you. Look out for statements like I”ve been doing this job for more than 30 years. I don’t care! All I care about is that I can get to know you well enough to trust you can help me with the things I cannot do for myself and to live the best life I can.
Number three – modify your home environment to be as self sufficient as possible. Raised toilets and shower seats can help a person slide pivot and save the back of an attendant. I don’t know a single soul that has worked in a nursing home setting for any length of time who doesn’t have serious back problems. If it’s not back problems some people are just not all the way there when it comes right down to it. This may be because a person is uncomfortable but it may also be that a person has ulterior motives like wanting to take advantage of you. More often than not you have a whole flock of people who are just not nice as individuals period. So be careful out there.
My very last piece of advice is not be afraid to throw a civilized temper tantrum to get what you need. It makes absolutely no sense to me whatsoever that I can go almost anywhere in public and accessibility principles are at least thought of but not in most HUD based apartments. The bottom line is this if it would not pass at your local school district or at Walmart it should not pass in your government funded apartment but it does.
A word of caution here If it becomes apparent to businesses that you need help with bathroom care tasks you will most likely be told to bring a care attendant with you, use the bathroom before leaving home or not to show up at all. If the problem persists you will be given a no-trespass ban notice. It’s also just as equally socially unacceptable to present at internship and professional settings and the general public in states of uncleanliness. At our own Disability Support Services it is a major nono for staff or student workers to get a portable urinal out of your bag on the back of your wheelchair because of the risk of blood borne pathogen safety risk.
This is why persons with mobility impairment need accessible bathrooms at home. The laws that govern who can live where need to be changed now. I am not saying persons without severe mobility impairments don’t deserve nice places to call home! I am however saying that apartments with specific features aimed at helping those specific issues like a roll-in shower roll-under counters extended square footage need only to be rented out to those who truly need them with a maximum 90 day turnover.
This business of taking one to two years to rent out a vacant fully accessible apartment to someone whose medical diagnosis does fall into the category of paralyzation it’s not okay for a tenant to live under any circumstances whatsoever. But it’s not just the lack of need for a wheelchair that’s at issue here. More often than not lately we have wound up neighbors that appear to be only of mental health impairment in nature. These situations have outbursts so severe that they have left some wheelchair users in fear for their own safety including myself. We do not have 24 hour supervision at Heartland Apartments.
I know Home Services has, for example, a Determination of Need or (DON) score. A home services counselor comes to your home once a year and asks you a series of questions about your assistance needed with your activities of daily living. A score is given based on your responses and the counselor’s observations to determine how many hours per month a worker is allowed to assist you with things you need help with. some tenants over the years have not had any.
The process for obtaining a higher level wheelchair is a lot more complex than many realize. It’s not just something that can be faked or pushed through in five minutes. If a doctor and or therapist tries to push it through too quickly without due process he or she can be faced with loss of licensure or even go to jail. The process for obtaining a mobility apartment should be just as equally challenging. Adult and child protective services need to be contacted immediately when a mobility apartment opens up to ensure safety for caregivers and clients.
Everyday there are mobility impaired individuals stuck in nursing homes because they don’t have a safe home to go to. Sometimes individuals in wheelchairs I know have had to transfer out of their wheelchairs into a rolling office chair without breaks because the bathroom door is too narrow for them to get through. Just in case you didn’t know anytime you see someone in a motorized wheelchair or anything other than your standard hospital chair has a corrective seating seating prescription in it to help a person achieve as correct posture as possible that a person can’t correct automatically because of a medical condition. I had to take the office chair route to bed one time because the actual seat on my chair was broken and nearly fell out halfway between the bathroom and bed.
Now, think about that for a second! A wheelchair is medicine in the same way that diabetes medication, eye glasses are, or pills a doctor prescribes to treat any number of ailments. The average person out there doesn’t think of a wheelchair or walker as medicine but it is.
The first order of business that would have a major impact in this situation is to demolish non ADA compliant apartments and reconstruct them one at a time. In order for that to happen however one needs to realize and society does for that matter that each is just one individual case. Stop thinking just because you know one or even 100 people in a wheelchair that they will present the same way as the next person because they will not and never will.
The final topic I want to bring to your attention is that of choice. Yes, that’s right, choice! We make choices constantly about how we respond to everyone we come in contact with throughout our lifetimes Some less irreversible than others will however. My very best guess is the average person on the street has not even turned a blind eye to what happens: a non-mobility resident moves into a mobility apartment and another suffers because of it.
It also does not seem very ethical to me at all when you take into account the vast majority of tenants who live in these are social security recipients that no social security money should be going to pay for any apartment that would be deemed unsafe for someone. To all social workers, doctors, and all others who assist in getting people qualified for mobility units to understand what the features of that specific unit are and to know what specific feature resources are available in your area.
I don’t know how many times I’ve tried to explain what my building is for. Even my own doctor’s office and other case manager’s claim to not know what I’m talking about. My final word on this subject is whatever your most challenging situation in life we all have in how we respond to it. If you and I together don’t realize we have a choice, what else is there?