Report on Conditions for a Disabled Delegate at the Democratic National Convention in Philadelphia 2016 by Shelley Pineo-Jensen, Ph.D.
Preface This narrative focuses on the ADA aspects of my work as a Bernie delegate at the convention. Many other things happened; there were other obstacles to accomplishing my goals that I have written about elsewhere.
My story is not unique; I have heard from people whose ADA needs were well met and I have heard from people who had a far worse time than I did. One of the respondents is probably suffering from PTSD as a result of her experiences being a delegate. Some disabled delegates left and did not come back. Some were not able to vote in the roll call vote.
I was fortunate to be able to complete my goals as a delegate - to vote for Bernie Sanders and to support his progressive agenda in every way I could. I did not suffer more than others, I was not more brave than others, my experience was not particularly significant. But it is my story and I am privileged to be able to tell it the way I want. That is a key benefit of qualitative research - the respondent is heard.
Framing the Narrative Let me begin by saying I have had a long life as a social justice advocate. My first demonstration was tree sitting during the time that I was attending Portola Junior High School in Orange County, California, circa 1965. My friend Monica was upset that some large (humongous really) avocado trees were slated to be cut down to make way from some tract houses. We decided to climb up into the trees and cry – as a public display of sorrow at the loss of the trees. We brought sliced onions in a plastic bag because although we were very sad about the loss of the lives of these old giants, we were not sure we could produce tears at the requisite moment. We fulfilled our mission with one flaw – no one ever saw us – or if they did they paid us no mind.
Jumping ahead to the late ‘60s, I opposed the Viet Nam War. I went down to the “Peace Center” in Santa Ana and schemed with others to leaflet the local draft board. This mission was another weak attempt – we hid in the bushes out in front of the parking lot and accosted likely prospects but we were green-as-grass little protesters. But fear not – my empowerment would eventually arrive. And protesters like me DID stop that war and bring our soldiers home. Nixon WAS driven out of office. Those were truly awful times to be an American and the country was in open revolt. Four killed at Kent State – innocent children really, non-violent protesters cut down for opposing a war.
So I’ve been pushing myself all my life to get out of my comfort zone and make a difference. I’ve had a life of social justice activism, some of it successful, some not so much, but all of it purposeful. Some of my work has been for causes like saving a branch library from being closed, attempting to block a toll road through pristine coastal hills, recalling school board trustees, and keeping large jets out of a local airport, but most of the time my work has been as a volunteer for the Democratic Party. My first campaign was for Bobby Kennedy in California; I was too young to vote and they wouldn’t let me walk precincts, just help in the office. In the interim I’ve made thousands of phone calls, knocked on hundreds of doors, and registered voters in several cities in California, as well as in Colorado, Oregon, and lately Virginia. I was a delegate to the Colorado State Convention as a delegate for Jesse Jackson and the Rainbow Coalition. I’m a life-long Democrat.
I worked hard to get Bernie Sanders on the ballot in Virginia and to secure as many delegate positions for him as possible. I determined that I should be a delegate to the Democratic National Convention (DNC) in 2016 because I needed to have confidence that the female Bernie Sanders delegate from Virginia’s First Congressional District would be a strong advocate for Bernie Sanders and his platform and that she would demonstrate opposition to the Trans Pacific Partnership (TPP). I knew I could count on myself to get the job done. I had no idea the challenges that I would face as a person with a mobility disability.
Mobility Issues I acquired degenerative arthritis gradually over the last several years and and before the convention I started using a cane due to weakness and pain in my right knee. I cannot carry my purse or other goods. I cannot stand in line easily. A lot of walking, especially on concrete, makes it worse.
I was a public school teacher for ten years. I bought the “Cadillac” insurance paying, overpaying tens of thousands of dollars and getting great health care. I retired from teaching and returned to school at University of Oregon where I had the mediocre health care plan we bargained for in my union, the Graduate Teaching Fellows (AFT/AFL-CIO). In 2013 I graduated with Ph.D. in Educational Methodology, Policy, and Leadership out of the College of Education; I joined the ranks of the unemployed. This is about when my knee started to go bad.
There is no knee surgery for the un- and under-insured. I did not qualify for any government subsidized health care until Spring of 2016 but now I am preparing for knee replacement surgery. Without Medicare, I would not be having this surgery and I would become further debilitated, living the life of a cripple – in pain.
I am privileged, as a far as my disability goes; generally, my husband or the older of my two daughters drives me around and carries my stuff. Generally, I have great support and can continue all my social justice work unabated. Perhaps I need recovery time that able people don’t need, but other than that – I’m in the game as much as I want. I worked hard to get Bernie on the ballot and to earn him delegates from Virginia to the Democratic National Convention.
The day I learned I had been elected to be a delegate for Bernie I started communicating with the DNC with requests for accommodation. What I required was that the younger of my daughters be designated as my mobility assistant so she could carry my stuff and get me things (i.e. food) for the first two days at the convention. After that my daughter would go back home and I would need whatever support would be provided by the ADA team. They told me that a golf cart service would take me to the arena and once there, a wheel chair would be available with someone to push it. After months of communications, including numerous emails, some phone conversations, and surveys to fill out, the Friday before the convention the DNC confirmed that my daughter would be given a floor pass to the convention as my mobility assistant.
Figure 1 – Example of crowd control device
Day One When I got to the Virginia Delegation Breakfast it took some time to get my credential and food. By the time I finished that work, there were no seats left. I asked our Delegation leader if more chairs could be brought in but she just put me at the VIP table right in front. My mobility assistant was not able to sit with me, but we communicated by text.
Immediately after the breakfast presentations and post-breakfast meeting with the rest of the Virginia Bernie Sanders Delegation, my daughter and I took a taxi, intending to avoid the steps of walking three blocks to the front of the Pennsylvania Convention Center. The taxi driver did not get us very close to the front of the building, and once inside, it turned out the TPP workshop had been moved or I had been misinformed as to the location – but it was at the extreme other end of the building. I hobbled along, saying “Hi” to the more agile delegates I knew as they passed me to go to the event. Eventually we arrived and got seats near the front on the far right with other Virginia Bernie delegates. I got a TPP bracelet and a now famous circle/slash TPP sign. Right before Bernie was due to go on, I left to use the restroom. While I was gone, they cleared the room while the Secret Service swept it. I was fortunate to be right near the door and was permitted to sit in the chair used by the person checking credentials for what turned out to be a long wait. My mobility assistant was in communication with me by cell phone – she had my purse and food bag. Somehow she made it up to the front to join me and eventually we moved into the room as people crushed forward when the doors opened - creating a moment of deep anxiety for the people in the very front, but all ended well.
After Bernie’s thrilling speech, we exited the building using a nearby door (if a block away can be considered nearby) and began a long and frustrating trek to locate the shuttles that were to transport us to the convention. I managed to communicate with the transportation staff about my mobility issues and was moved to a location with other mobility challenged souls. It was a madhouse of people jockeying for position; people were standing in the street and the police were moving them back, but then the people were back in the street. It was very hot and very humid and pretty much everyone was uncomfortable and cranky. Able bodied people managed to get on before people who had been identified as disabled. They knew no shame. My daughter and I did manage to get on the first bus out.
When we arrived there was a short walk to the security tent where disabled folks were let in the first doors and moved through without problems. Then we waited outside, back in the heat, for golf carts to come to carry mobility impaired individuals to the Wells Fargo Center. We could see people stopping the golf carts before they got to the people waiting near the security tent, so that the golf carts were not making it to us. People waiting for the disabled transportation starting yelling and some went out and accosted the golf cart drivers.
People had so many questions; there were only vague answers. Those who were patient were passed up by those who were pushy. I tried to be fair, but I was hot and I was not letting any more able bodied people push past me. That was a feeling that would recur over the four days of the convention.
The golf cart dropped us off with inadequate instructions as to where I was to go next. There were unusually large cable covers blocking the way, but there was no choice but to go over them. There was no clear signage so I walked farther than I needed to go into the wrong entrance which was for VIPS. Luckily for me, the folks there were very helpful. They gave me a chair and then one of the them went over to ADA desk and brought back a volunteer with a wheel chair who took us to the ADA desk.
We signed out a wheel chair and my daughter wheeled me down to the floor and we found an aisle seat. We kept the wheel chair there next to my seat. My mobility assistant was extremely helpful, getting me food and helping me negotiate the eating of same. The rest of the evening was uneventful, other than getting hit in the back of the head (hard) by an unconcerned and thoughtless CNN camera man. (I had stood up at my seat and turned around in preparation of leaving to go use the restroom and he swung around fast and hard and clobbered me.) My daughter tried to get me an ice pack, but after a long wait in line to see a medic, she was refused. I would have to go all the way back there myself to qualify for an ice pack. I skipped it.
Leaving was a challenging, because it was so crowded. We kept the wheel chair and pondered how we were going to get it back to the ADA desk after we got to the shuttle. After waiting in the queue, corralled by crowd control barriers (See Figure 1) that presented obstacles to wheels every seven feet (See Figure 2), we were directed to a different bus from the able-bodied. Several wheel chair bound, walker using, and cane using people were pulled out of the line and put on a bus – I was very surprised when the bus did not take us back to our hotel. Instead it dropped us off a location that was three blocks from my hotel. My knee was very aggravated at that point – it was pretty much blown out before I left the Pennsylvania Convention Center in the morning, truth to tell, so every step was painful.
At the first corner, a woman in a neon vest who seemed to be associated with the DNC asked us “How are you doing?” and I answered “Not so good – the bus driver wouldn’t take me and these other mobility impaired people to our hotel and I can barely walk.” And she said “That’s not right.” Then she flagged down an empty shuttle bus and coerced them into giving me a ride to the hotel. My mobility assistant and I rode in the dark empty bus with the driver and a police officer (one on every Convention bus, each one wearing a bullet proof vest.)
It took several hours to get back to the hotel after the convention was over. My daughter was there every step of the way, providing support of all kinds and a positive can-do attitude.
Figure 2 – Barrier design
Day Two I got up early so that I would get a chair for breakfast. I left my daughter sleeping and headed out with only my driver’s license in my pocket and my “walking stick” (See Figure 3) in my hand. First I went to the wrong place; the breakfast had been moved to a larger room. I went in to drop off my sweater onto a chair to secure myself a place to sit while I ate breakfast and watched the speeches. Our CD congressional candidate was there and talked to me for what seemed like a few moments. By the time I got back out to the lobby area to get my meal, all the food was gone. I learned from staff that apparently the press and friends of delegates had eaten the food that was ordered for actual delegates. I got my sweater and started to head out to go to the restaurant downstairs for breakfast but a staff member stopped me and told me to go sit down and they arranged from some food to be delivered to me. No fruit, but still it was food (tasty scrambled eggs, bacon, and potatoes) and I appreciated it. I enjoyed the speakers and was glad that I was not somewhere else.
After all the unexpected walking on Monday, I chose to skip pre-convention caucuses on Tuesday and just concentrated on getting to the correct location for the shuttle buses with plenty of time. Under pressure from my daughter, I agreed to get shopping cart so I could push my bags around rather than carry them, since that was one of the obstacles I faced. My daughter and I went out shopping for a pseudo-walker and found a push cart such as is normally used for laundry or hauling groceries home from the store (See Figure 4) for me to carry my stuff on Wednesday and Thursday. We did not think I would need it on Tuesday, even though my daughter was going to leave Philadelphia after getting me set up at the convention. We assumed the wheel chair aide supplied at the convention would be able to help me to the shuttle and we did not have a good plan for the part where I got dropped off blocks from the hotel. My ad hoc plan was to rely on the of kindness strangers or just tough it out in pain.
The second day the line for the shuttle was much more organized, with barricades set up to keep people out of the street and a sign indicating where the ADA line was. With my mobility assistant there to help me and a better understanding of the situation, things went more smoothly. The golf carts seemed to come more quickly and not get waylaid. There was a sign pointing to the correct entrance to the ADA table.
At the ADA desk I worked with staff while my daughter went ahead to secure me an aisle seat in the last row, if it was not too late. My daughter would be departing for her home in New York after she got me settled. She missed two days of work to help me, but could not afford to miss more. My daughter and I had agreed that I should work with ADA alone, to prepare for the next two days. I met the wonderful Kathy who gave me her cell phone number. This turned out to be very important – the people at the ADA desk had failed to give me the number to text for assistance. Kathy was a delightful human being who helped me check out the wheel chair and then wheeled me down to the floor where my daughter was waiting with my bags and an aisle seat. We kept the wheel chair there next to my seat.
My daughter got me settled, brought me food, and then left to catch a train back to New York.
This was the day of the roll call vote which was mentally and emotionally exhausting. I cheered with passion every time Bernie won a state, and pondered the superdelegate system that robbed him of victories he won with the popular vote.
Worn out and wishing to avoid the intense fire trap that was the hallmark of leaving the convention center after final gavel, I decided to leave early, before the floor was locked down by the Secret Service for the main speaker. Kathy showed up promptly.
Contrary to what I had been told numerous times, that there would be shuttles going back and forth from the hotels to the arena all day, there were no shuttle buses available until 10:00 pm. It was only 8:00 pm. I was told I could take Uber right next to the Security Tent. Kathy me pushed me over to the golf cart pick-up location and after a bit of a wait, I was able to get a ride. Sadly, the ride was only to near the Security Tent, with Uber a good two blocks farther away with uneven paving off the property.
My main problem was that I was not able to carry my bags. I regretting not bringing the shopping cart. When the golf cart pulled up to the drop-off, I saw people in volunteer vests over by the disability golf cart pick-up spot adjacent to the Security Tent; I started yelling at the nearest one to give me a hand. A man came over and agreed to carry my bags, but only as far as the edge of the property. He said if he carried my bags all the way to the Uber Tent, he would have difficulty getting back in to do his volunteer job. He said he risked not getting back in at all.
When we got to the edge of the property, there were a lot of police officers – it was a gauntlet of police officers, really. So I started talking to them to see if I could get one of them to carry my bags, or get me some help. At that point the man in the volunteer vest said “Oh never mind that, I’ll carry your bags” and so I made to the Uber Tent. With some challenges there, I was able to coerce one of the Uber workers to carry my bags out to the ride. The ride was very pleasant and I made it back to the hotel exhausted.
Figure 3 – My walking stick
Day Three I managed the credentialing and breakfast and skipped the caucuses. I needed my energy for the challenges of transportation. I would not be able to attend any caucuses, workshops, group photo opportunities at the Liberty Bell, or do any sight-seeing. I would not be meeting anyone for a bonding meal or drink.
I was totally on my own, using my mobility device for the first time. I discovered that walking was much easier and less painful using the walker instead of the cane. Of course maneuvering the thing around was a new challenge. Enduring the questioning stares was something I knew I would have to endure. I was early enough to be first for the ADA line and chatted with the first person who was waiting in the abled line. I was on the first bus after the two people in wheel chairs. There are only two spots for people with non-collapsible devices. I chose a good seat for myself by the rear exit. A very old woman with a nice walker with a seat (See Figure 5) got on. The woman behind her, who was able bodied, was explaining to no one in particular but in a loud and annoyed sounding voice remarks about why we were moving so slowly: “We have to wait because someone in a walker is going slow.” The hapless woman with the walker stoically folded up her chair while the annoyed woman inched closer and closer while announcing more news, “Oh my God, she’s folding the chair up now.”
I had seen the woman with the walker on the bus before and had spoken to her briefly. Now she turned to me and said, “you should not have got on the bus before me because you don’t have the right kind of walker.”
I told her, “I did not know that.”
She said, “Oh yes you did they told you yesterday.”
She kept hectoring me. I defended myself a bit. Then, contemplating her great age, her dressy outfit, and her make-up, I stopped talking to her. She was pretty enough, but it was obvious that her vision must be really bad to go out with her make-up smeared on her face like that. Mascara all around her eyes, lipstick smeared, checks rouged brightly in stark contrast to her pale complexion. It just startled me really. I counted my blessings and held my tongue.
By the time we had arrived at the check-point, I finally had a come-back for that woman. Of course I did not deliver it, but it made me feel better to think of it. I contend that my $30 wire push cart for shopping push cart was my mobility device, equivalent to hers. The fact that she can afford a better device does not give her the privilege to board before me. In fact, the opposite should be true.
Arriving at the security checkpoint at the WF Center, folding up and hauling my cart was a hassle at the golf carts. There was no accommodation for that kind of thing. It was about four blocks, maybe more, from the security tent to the entrance of the arena – a long way to walk on asphalt for a person with a mobility impairment. So I made it work; I demanded the front seat on the golf cart and used the floor to hold my bags and balanced the folded cart precariously on top. The fact that it was driving rain did not contribute to the ease of the operation.
When I arrived at the ADA desk, Kathy was there and brought me a wheel chair immediately. As she wheeled me down to the floor, she yelled at the able-bodied people blocking our path and gave particularly harsh treatment to those who attempted to push past us to board the elevator ahead of us. Leaving the WF Center to wait for the shuttle, we came upon a curb. I told Kathy that I could get out and walk down it but she said that would not be necessary and proceeded to push me straight forward off the curb. Naturally I was pitched forward out of the chair, but we were in a crowd and people caught me and the chair. I was not injured but I realized that Kathy had not received any training about how to push a wheel chair. Even with that disaster, I am very grateful to Kathy and the support she provided me. She waited in line with me and thousands of other people until I was able to board a shuttle bus. The shuttle dropped me off at my hotel. I was exhausted.
Figure 4 – Low status walker
Day Four Kathy was not there when I got to the ADA desk. I was given a slip of paper with instructions about how to text for assistance. A young man pushed me down to my seat.
No one ever came to check on me. No one from the ADA desk ever answered any of my text messages to coordinate my departure. After the balloon drop the signaled the end of the convention, I knew I was on my own. I used the sharp pin on my largest button (Tim Kaine) to pop the balloons all around my seat in order to locate my bags and bring the wheel chair around. I popped a lot of balloons to make a path to get out.
It was a lucky thing that I had insisted on keeping the wheel chair with me. I packed up and headed out, pushing my wheel chair for a walker with my stuff piled onto the seat. The wheels kept getting hung up on balloons but I persevered. By my moving out quickly I was beating most of the crowd, who were still visiting and playing with balloons. Unfortunately, in my fatigue, I failed to walk underneath the convention center in the service corridors to the elevator closest to the ADA desk (and really didn’t know how to get back there anyway). I just got on the first elevator. This brought me up to the main hallway which was packed with people. In my long and frustrating journey back to the ADA desk and beyond I observed an uncoordinated mess. I saw caravans of wheelie people going in both directions through an intense sardine-can of humanity. At one point, I started telling the people who were attempting to pass me that mobility-impaired people “love to go slower than others and let people cut in front” of them, which stopped that activity for a while.
After a long and difficult struggle, I got to the ADA desk and checked in the wheel chair and picked up my push-cart walker. I wanted to join my fellow Bernie national delegates at a meet-up at the Xfinity Bar – nearby on the property, inside the concertina wire. At the ADA desk they directed me to the golf cart shuttle, and as we rode out I could see the big neon lights of the place, many blocks away. The driver stopped, out in there in middle of nowhere, half-way between the WF Center and the Security Tent, and beyond that, the Uber tent. Off to the right, several blocks away I could see the Xfinity sign.
At first I didn’t really understand that my choices were to get out there and walk at least a couple blocks in the dark with hardly any people around, or stay on the golf-cart and choose between Uber or back to the shuttle line. The driver offered no assistance. I got off in the dark and dumped my expensive purse and other bags on the dirty asphalt and fought with the cheap shopping cart to get it open and get my gear in it. When I was done with that project I was standing alone in the dark, blocks from any official help, wondering if I had taken leave of my senses. Then I thought about the Bernie party that awaited me and pushed off towards the large neon light beckoning me to the Xfinity Bar. I was grateful it wasn’t raining.
As I headed up the road I felt safe. I was anxious to get to my friends before the party broke up. A young man walked past me and then circled back. I had a momentary flash of suspiciousness but then expected an offer of help. It turned it he was a journalist for a technical magazine working on an article on advertisements in the election cycle. He wanted to know what ads I remembered. The company of the reporter was helpful. But I was starting to realize that there was no one else really walking over to that party. I was late.
When I got there, I found a few Virginia Bernie delegates gathered outside the venue talking. The party was breaking up and everyone was heading out. Some were going to join a protest march, in the middle of the night! That all seemed too much for me. As I came out of the bar area, I found a friend from my Bernie delegation. She wanted to know how to get to Uber and I knew the answer. Together we made it back to the hotel. My friend told me that she thought I was very brave to be out there on my own with my disability. I think that is correct. But I had adrenaline on my side.
Figure 5 - High Status walker
Comments The amount of walking I did permanently damaged my knee. Since I returned home I have had to get a real walker, which I now use in the house daily. I do not regret the price I paid to be a delegate for Bernie Sanders to the 2016 Democratic National Convention. I made a difference at the convention – I was one of the Berners holding up that TPP sign that forced the party leaders to capitulate on the TPP (See Figure 6). That was a job well done – worth the pain, worth the permanent damage to my knee. But if the Democratic Party is more than lip-serviced to the ADA community, things need to change in the kinds of support that is provided at our gatherings.
Figure 6 - My TPP sign during the balloon drop
The management of ADA support prior to the Convention was inadequate. The people in charge seemed to be making it up as they went along. I could not finalize my plans for my mobility assistant until the middle of the day on the Friday before the convention, when I finally received an email confirming that I had been approved. This was three days before the convention. The lack of lead time reduced options.
My mobility assistant had to leave me every day to go to another location, the Pennsylvania Convention Center (PCC) to get her credential; there she had to wait and go through security to get into the building. On Day Two, the person who was supposed to hand out the credentials at the PCC didn’t show up. She waited for 40 minutes, then was told it would be an additional 40-minute wait, after which she was told that she should leave and they would call her to come back when he got there. She walked away, got the text, and then had to go through security at PCC again. This took most of the morning when she should have been helping me. Her credential should have been at the same place in my hotel where I picked up my credential every morning.
Provide an additional ID or a sticker to be applied to the credential that indicates that a person has qualified for ADA services. Not all disabilities are visible. Many people with ability issues are also frail or vulnerable. They need special consideration.
Just like boarding an airplane, allow early entry for people who use wheel chairs and walkers, blind people, etc. This saves time in the long run. Bring them in while food services are getting set up.
Correct the flaws in the mapping of geographical parameters of service so that there are no gaps (i.e. no support to the Xfinity Bar). Bring wheel chairs to the edge of the geographic space served by the ADA services entity. Bring the golf carts to the exact rendezvous with the wheel chairs, a space with benches or chairs for people waiting outside for transportation/support.
Walk the routes with wheel chairs before the venue opens to discover obstacles like curbs and cable covers. Create a smooth route for people in wheel chairs and those who use mobility devices, or who have other mobility issues.
Plan for delivering mobility impaired people to the front of the line for the shuttles without putting them through the crowd control barrier system. Make sure there are benches or chairs at the places where mobility impaired people must wait for transportation. If it is very hot or raining, provide cover.
Control access to elevators to strictly serve ADA and service personnel. Move people in wheel chairs thru the closest elevator to the ADA desk to take them down to the lower level and shuttle them around in the service corridors – clear the halls and put up direction signs on the authorized routes to speed up transit for those with mobility impairment.
The first day there was almost no food available for a long time. This was less of a problem the rest of the days but always the lines were extremely long and the choices were limited. Coordination with vendors beforehand, working out routes for them to get in and time to set up before the delegates came in might correct the lack of sufficient food service, which is a particular issue for those with impaired health.
Being told that if we left to use the restroom our seat would be given away was a particularly unfortunate decision by the optics-obsessed handlers. I restricted fluids on Day Three in the middle of the afternoon, but on Day Four I restricted fluids starting at noon. It was too hard to get that seat for me to give up for a potty break. Restricting fluids is a strategic decision that created opportunity for political participation but is a stressor to health.
Securing a venue with sufficient space would solve the problem of not permitting ADA delegates to sit with their delegation as well as allowing room for the media so that they did not monopolize the aisles, hitting people in the head with their cameras. I was not the only one to be hit in the head by a camera. Getting a venue of the correct size with a more appropriate exit system than the WF Center would mean that the hallways would not be crammed full of people in a dangerous fire-trap for forty minutes or more at the end of the day. Getting up to get water or use the bathroom was a time consuming and frustrating process. A larger venue would help solve many of these problems.
Wheel chair assistance was provided by volunteers who were not adequately or perhaps ever trained to support a person in a wheel chair. One of the people assigned by the ADA desk pushed me straight off a curb and people around helped me not fly through the air and land face first on the pavement. This disaster could have required a trip to the hospital and a lawsuit against the DNC. ADA wheel chair and other support should not be provided by unpaid volunteers who can leave early with no consequence. ADA support at the Democratic National Convention should be paid for by the party.
No survey has been conducted on ADA services at the convention. Surveying participants in ADA services should happen within three days of the convention closing. The tool must be written before-hand.