"We Don't Do Slow"

 

Sitting in Washington D.C. traffic is like nothing else. Olivia’s ponytail hung on the back seat in front of me. Olivia, my bright-eyed, energetic caregiver was exhausted as we all were.

            “Should we look for other flights?” My mom asked.

            “No, we’re going to make the flight, Jean. That is going to happen,” Olivia stated.

            “We’re going to make it,” I said feeling weary.

We had just been at Capitol Hill in Washington D.C. and had literally walked (and wheeled) three miles that day. Going from congressional office to congressional office, telling my story, asking for funding was simultaneously exhilarating and exhausting. You can check out my video about it here.

            “Mom, it’s okay,” I said. Getting an accessible taxi took 90 minutes. This was why we were so late to the airport.

            “It’s about 10 more minutes away,” the taxicab driver well aware of our nerves explained.

            When we arrived, I got out of that taxi like it was on fire. When it was time to stand in line for security, Mom told Olivia to go to the gate the second she could. What happened next was horrific. Olivia flew through security running to the gate while Mom and I entered the checkpoint. I stuck my arms out to start the process of getting patted down.

            “We’re in a huge rush. We would appreciate it if you could keep that in mind,” Mom said. My poor mother was asking for some empathy on our part and the TSA agent replied, “We don’t do fast.”

Oh shoot. I definitely said a different word but you get the picture. 

She then proceeded to tell me that we had to go about twenty paces to where she would pat me down. This agent had control over us, and she was pure evil.

            “Can you give consent for the pat down?” the TSA agent asked me.

            I nodded and said, “Yes,” with my communication device.

            “I don’t understand you,” the agent said.

            You did, you just want to make sure my life is brutally difficult. This was a power play and we both knew it. Mom finally came over and the agent started the process. I’m used to this, so I anticipated where she was going. The pat down was over quickly. She proceeded to check my chair for weapons by wiping a cloth on the arm rests; this was standard procedure. What was not standard procedure was the fact that she insisted on opening my carry-on, taking out my wheelchair charger and scanning it again. I’ve flown at least 50 times and TSA has never had to take out my wheelchair charger. She was the epitome of someone who abused her power and loved making people miserable. Once that hellish part was over, Mom said, “Go to the gate!”

            Ladies and gentleman, you have all seen me drive fast. In the summer, I may go my fastest when Elmhurst University is empty. I crank the music up, turn the speed to max volume and think, Just never go this fast around other people. If you had told me last summer that I would  go this fast around other people, I would have thought you’d mistaken me for another brunette that uses a wheelchair. Nope…I was the crazy woman who was driving a wheelchair at a dangerous speed in Reagan National airport. I know dangerous and this was dangerous. I broke every rule that I have for myself. Gate C33…Don’t hurt anyone… Gate C33…Don’t hurt anyone…I made it to the gate. I saw Olivia.

            “Breathe, they understand. We’re fine.” Olivia said.

            Olivia transferred me to an aisle chair which is a narrow wheelchair made to go down the aisle of a plane. She buckled me in and proceeded to start unscrewing the back of my chair. Mom quickly joined her. Once they got the back down, Olivia put a cup over the joystick and spun the duct tape around my joystick at least 10 times. That joystick was secure. It would have been comical if not for the circumstances. The wheelchair was as short as physically possible. Once we were on the plane, we laughed about everything but security. Little did we know the second act was coming.

            The plane landed at O’Hare and we waited for the majority of the passengers to get off. There was a slew of kids leaving the plane too. They were very slow so the flight attendant told them to wait so I could walk off the plane. We entered the jet bridge.

            “That wheelchair does not have a seat belt. She needs a seat belt!” Olivia said.

            “We cannot let you use an aisle chair.” The airport employee said.

            At that moment, my wheelchair that had the seat back folded over and resembled a mountain of duct tape came into view. They suggested we use it. Olivia muttered under her breath, “Use common sense.” Mom had called Dad and asked him to come to O’Hare and assist with assembling the wheelchair which was why we didn't want to do it at the gate.

            “She can’t sit in that yet!” Olivia said exasperated.

            You fools!

            The pilot stopped the madness by saying, “Let her use the aisle chair. They can come to me tomorrow morning with questions.” The pilot was probably 50 years old and had a warmth about him.

Thank God!

            Olivia sat me in the aisle chair as my mom brought the wheelchair accessories such as my knee blocks and my communication device. Nope, I couldn’t say a word to these idiots, and I can’t decide if that’s good or bad. I don’t have any kind words towards these people besides the pilot.

            It’s a Hannah parade! The airport employee is pushing my precious wheelchair looking like a mound of duct tape, Olivia is pushing me in the aisle chair and Mom is carrying eight bags behind us. Olivia whispered down to me, “If someone gives us you-know-what about this not being a “wheelchair,” I’m going to lose my…”

            “That is not a wheelchair!” One employee yelled across the airport.

            Olivia is going to lose her…

            “It’s fine! I’m with them.” The airport employee said.

            As we entered the baggage claim, my thought was one, Able-bodied people are quite slow when walking and I can’t wait to go to bed!

            When we saw my dad at baggage claim, he greeted us by saying, “Olivia, this is our lives. Isn’t it neat?”

            That’s about right.

 

 

Just Another Crazy Day

“Bye, Hannah, see you next time,” my therapist called out as I left physical therapy.

I parked my wheelchair a few feet away from the door to check my phone. I wasn’t expecting any messages. Alarmingly enough, I had four text messages from my caregiver, Autumn, saying that the muffler needed repair. Apparently, she had called mom explaining that she was going to another town to drop off my orthotics while I was in therapy and heard explosive noises. My dad met her in the parking lot and determined it was a problem with the muffler. This is all while I am in therapy where she knows I don’t check my phone.

I get out of the green elevator into a sterile lobby. I’m in the lobby of a medical building with grey carpet and a surprising number of dental offices as well as a number of law offices.

Me: Are you okay?

Autumn: Yes, your parents were of ton of help. Can you Google mechanic shops around town?

I agreed.

Remember, I can’t call them because they would not understand my communication device over the phone. I’m not working with much, but I do find a nearby Midas. I happen to glance over to my left and there is a 90 year old woman on a gurney not doing too hot. Are you serious? Why is that woman in the lobby? This is a normal office building. What is going on?

When Autumn gets to me, she says, “Oh thank God the ambulance is not for you. With the day going the way it is, I would not have been surprised. And the blog is writing itself, isn’t it?”

“My thought exactly. By the way, there’s a woman in the lobby on a gurney, I don’t know why but it just fits the day. That is who the ambulance is for.”

“That’s the cherry on top,” Autumn said with a stunned look on her face.

We drove 10 minutes to the Midas. They were really nice guys, but they did not have the parts. Another location did have the parts which really was a blessing although that place was full of jerks. I went to see if Lyft or Uber had options for accessible vans. They did not which is more frustrating than I can express. Lyft and Uber… do better! Autumn had to pick up her little boy from school. It closed in an hour.

Her aunt who lives close by thankfully was home and could pick him up. I had a red velvet loaf and a caramel macchiato from the Starbucks in the Target for lunch. What a healthy day!

Her little boy came very confused why he was dropped off at Target.

“Mommy, why are we at Target?” The little guy asked.

“We had a long day because Hannah’s van broke down. Hannah bought you a treat. She got you a loaf from Starbucks.”

“Thanks.”

“Least I could do.”

The truth was I felt like crap about what happened. I respect the fact that my caregivers leave at a certain time. This had been utterly out of my control, but I still felt bad.

We finally got home!

“Go home,” I said to Autumn with enthusiasm.

“OK. Are you sure you don’t need to use the restroom?”

“Nope. See you in the morning,” I replied.

I was so tired from problem solving all day. I called Mom. We both knew this was going to be the blog post for the month.

 

This post is dedicated to Judy Heumann. She was a fierce disability rights advocate and one of my personal heroes.  

Three Speeches, One Great Day

             “Hey, H.T.,” Kevin said as he greeted me in the parking lot.

            Kevin, my mentor and friend, had asked me to speak at the elementary school he worked at. After the elementary school, we would speak to the middle school students, and then I would speak to future clergy who wanted to work with people who have special needs. I was as excited as a kid on Christmas morning. I live for days like these. I get to fulfill God’s purpose for my life.

            “So, first we have the kindergartners. We’ll spend about 20 minutes with them,” Kevin said.

            I was excited for their earnest questions and comments. I never leave a kindergarten class not been thoroughly entertained. This class did not disappoint.

            I ended the speech by saying, “If you see someone who is different, go up and talk to them. We like making new friends. I am so glad to be your friend now, and I would really love to answer any questions you have.”

            The questions began.

            “Do you have pets?” One little guy asked.

            “No.”

            “How fast does your wheelchair go?” Another child asked.

            “Seven miles per hour,” I responded.

            “Do you sleep in your wheelchair?” One kid asked. I get that question every time with kindergarteners.

            When the teacher made eye contact with Kevin and asked in a hushed tone when I was diagnosed with my disability, I interjected. I was more than capable of answering that question for myself. I typed out “lost oxygen at birth.” The teacher nodded and asked me not Kevin if we could talk about it. We certainly could!

            “So, when I was coming out of my mommy’s tummy, I didn’t have enough oxygen and my brain has an owie on it,” I stated.

            “Just take deep breaths,” one child suggested.

            I let out a laugh. Oh, how I love kids! And it’s a little too late for that!

            My presentation for the middle school students was on bullying. I talked about how I was ignored by most of the kids in middle school and high school. It hurts to this day. I definitely have a lot of scars on my heart from kids viewing me as invisible. Funny how I’m a 32 year old woman who is living her best life and it still hurts.

            Then, I had a presentation with future clergy. I told them about different experiences with clergy. Some priests get it right off the bat, some priests take a few months until they really understand that I don’t have a cognitive disability, and some priests never understand. Clergy are merely humans; they are not perfect. Last month, I talked about physical access to a specific church. I relayed that humiliating story to the students too because they need to know how critical accessibility is.

            All in all, I had a great day. I live for these days. Nothing fulfills my heart quite like speaking.

Carried Into a Church

            Wearing a dress that epitomized a little black dress, I looked at the church. It was completely inaccessible.

Julia, my caregiver said, “Hold on, I’ll be back with strong men.”

I don’t know where you think I’m going to go.

When the strong men came in the form of the groom’s friends, I was grateful because the January cold was not being kind to me. I was freezing!

“OK, we go through the entrance that could not be farther from where we are,” Julia said running down the stairs.

“Of course.”

Once inside, I saw the team of strong men.

They’ll do!

Guys who were friends of the groom walked down fifteen steps. They were in suits and quite aware that the wedding would be another 70 minutes. They were happy to have a distraction. I’m Catholic so I’m used to long weddings.

“Hi, Hannah! We’re happy to help,” one of the guys said.

That guy took the top half of my body; his arms through my arm pits and the other guy had his hands under my knees. The other two guys spotted. 10 years ago, I would have been over the moon to have had these guys carry me. However, at 32 years old, this is substantially less fun, and inaccessibility is a true burden instead of a fun adventure. The family of the bride left a manual wheelchair for me at the top of the steps. I was placed in the unfamiliar wheelchair without my communication device. I was ecstatic about the wedding however if this was my first encounter with a Catholic church, I would not have gone back. Why would I go back to a place where I wasn’t able to be physically comfortable?

Back to the wedding. The bride was my friend, Natalie. She is Julie’s twin. Go back to the November post if you want background on Natalie.

Of course, she looked like she walked off a runway. With a strapless fitted dress complimented by a huge bow in the back, she was the epitome of a stunning bride. After all the tragedy this family has endured, it was glorious to see them all smiling.

At the reception, I mingled with many of the guests. The groom’s mom, for example, knew my physical therapist of fifteen years through their book club. There were a bunch of people who I had that type of connection with.

During the speeches, the three siblings who were unfortunately watching from Heaven were mentioned several times. I had the honor of being mentioned in light of Natalie’s social calendar. She’s friends with everyone and she and I get together on a regular basis. Her dad pulled off the ultimate

At the reception with dad and daughter!

surprise by having two Broadway singers perform “For Good” from the musical Wicked. Not much can make my jaw drop but this did! I was truly gob stopped.  This was a night that Elmhurst would remember for a long time.

 

“Did you have fun tonight?” Natalie asked.

“Yes!”

“Thank you for coming especially with all the stuff at the church.”

“Wouldn’t have missed it for the world.”

“Let’s get together after I get back from my honeymoon when we can actually talk.”

“Sounds perfect!”

It did sound perfect. I like when Natalie comes over just to talk. It’s beautiful and our friendship gets stronger every time we spend time together. That is why I go to these big events. It’s a culmination of all the small moments because I wouldn’t get carried into a church for just anybody.