Partnership for People with Disabilities

“when it all comes down to it, the person that's the patient is the patient. So the doctor should use some form of communication to talk to the patient”

 

 

“she makes me smile and, um, makes me feel happy”

 

 

What makes a good doctor? “Well, he cares about us and he like cares about our health”

 

“I feel good. I felt comfortable and I felt he's a, he is a good doctor. Okay. And he, he did in, he always look me in the eye and, um, lemme know what I, um, need.”

 

 

I feel a little bit, it can be emotional because I was talking about myself and I really don't talk about that part of myself to nobody really. I really don't talk about it. Some can, some of it was kinda like happy and joyful because sometimes I'm, I can speak up for like other people. It can, it can be like you speaking up for other people when they can't speak up for their self

 

“when I have questions or when I need, uh, when I need to request something, he's always there to, uh, respond or to, uh, like support me and things like that. Yeah, he's good. He's, he's a good doctor.”

Advice for providers: “be more patient with other people and, and be, um, respectful”

 

“ I felt like I was not heard and sort of like abandoned at times. Because, I kept calling the nurses for help.”

 

 

“So all I can really ask for professionals is to do more research and listen to, um, the patients at, when they tell them about their, what's wrong with them, listen mm-hmm. <affirmative> and try to accommodate the best way they can.”

 

“ take time to listen to the person with disabilities who's coming to you with their discomforts and whatever they're feeling. Even if you, even if you, you, you know, you have the assumption that maybe something is happening, don't assume, please take what people with disabilities have to say because again, they know their body and they know when something is not right. “

 

 

“Well, as far as treating people with disabilities, I feel like that they should treat them like anyone else, but know that they might need a little more support with certain things”

 

Maria Johnson has cerebral palsy and just started dating. Maybe she needed birth control to protect herself. Maria made an appointment for an exam. During the exam, she noticed that Dr. Alex was kind of weird. Dr. Alex asked as if she was contagious because of her disability. She did not want to give Maria the exam. Dr. Alex and Sally, the case manager, talked to each other about Maria's care, as if she didn’t exist. As a result, Maria could no longer tolerate them speaking. She had to utilize practical thinking. The doctor nor the case manager had a good bedside manner.

In this case, Maria realized that she needed to advocate for herself. It meant it would be the first time she needed to use her words to stand up for herself. She decided to make a complaint to the medical board, but they felt Maria was incompetent. Maria took it upon herself to be adamant about what was wrong. She strongly utilized her voice to communicate with the medical board. Maria shares her knowledge to emphasize that just because she has a disability does not mean that Maria does not know what's important to her. The whole experience taught Maria to better understand her care and that she has a say so and a choice of what doctor is chosen.

 

My experience with the healthcare system has been good. I have had positive experiences with the nurses/doctors that have worked with me. They took their time to explain things to me and they treated me with respect.

I have a connective tissue disorder that affects the vessels in my heart.

I used to go to Johns Hopkins every year when I was a kid. Where the doctors would check my heart to see if it was getting better.

And over the years it has gotten better and I’m now at the point where I would have to get my heart checked once every couple years. It has even gotten to the point where I now don’t have to go up to John’s Hopkins and instead I see the doctors at VCU check it here in Richmond.

Now you might be wondering how it has gotten better over the years with me having a mild intellectual disability.

I strongly believe it is from eating a mostly plant based. And I’m also an athlete where I used to be a competitive swimmer in Special Olympics where I actually swam in the 2014 USA Games (Special Olympics national games) where I won a few medals. And now I have 2+ year run streak which is where I go out on a run every single day year round. Even  when I’m sick or injured. I honestly consider it more of a lifestyle than anything else.

Lastly I strongly believe that with me having a connective tissue disorder has actually helped me become a healthier person with the help of my parents and the doctors that have been seeing me over the years. And also by being a part of Special Olympics and now having a 2+ year run streak. I also believe that it’s from me eating mostly plant based. Since there have been a number of studies that have shown that the number one factor to our overall health is what we eat everyday.

In the hospital after Pump Surgery in October 26, 2017

This is after my fourth pump surgery in the hospital. It looks like I was doped up on pain medicine. My IV is in my hand because they always try the inner elbow which penetrated or blew up in my arm the last time I was sick. They did well with taking care of me during and after surgery. My mom was there to help with a voice. I felt sore and hurting in my stomach every time I laughed and it hurt. I was so hungry after surgery that I felt like I was starving. It took until almost dinner time to have food. When I was discharged, it took three hours to leave and get out of the hospital to go home.

 

My Story 2

In the hospital with COVID in September

On September 18, 2022, I noticed that my taste was off a little. The next day, September 19, 2022, I woke up with cold-like symptoms. I tested positive on September 20, 2022. On September 21, 2022, I could not get up off the toilet and call 911. In the hospital, they were checking my EKG and breathing. I was in the ER all day until almost midnight. I was in the hospital room from morning September 22-24, 2022, to get rehydrated and get my strength back. When I asked for food in the ER, It was good. When I needed to go to the bathroom, they did a good cleaning me up in the ER. In the room, my food was cold and they gave too much Miralax. When I needed to go to the bathroom, they placed a purewick and did not change often enough and didn’t clean me well. They gave me Remdesivir. I didn’t like the way it made me feel. My IV infiltrated in my arm and they didn’t listen when I told them about it. The nurses said it was okay.The night nurse finally changed it. After the nurse took the IV out, it took a while to put a new one in my hand. The medicine started burning in my hand. They again did not listen and told me it was normal. When it was time to see me for physical therapy, I had trouble transferring to a chair because I didn’t have my wheelchair. After the hospital, I had to start physical therapy because the hospital kept me in the bed for four days. It made me feel depressed, but I was able to get through it.

 

 

I am at the ER waiting to get my toe checked to make sure that it is not broken.  I was at an event and my chair flipped over.  My chair landed on top of me while my wheel landed on my big toe. The doctor treated me well enough. He was not aware of my disability and did not know what my bones looked like on the X-ray to tell whether my toe was broken. My bones are very thin, so he was not able to tell what he was looking at.  He told me all he could really do was give me some pain medicine until the following Monday for me to see my regular doctor that is used to my disability. The doctors listened to me, but I was in a lot of pain.  I could not be too upset because they did the best they could.

The doctor was very patient and treated me with respect. The doctor listened to me and did the best that he could to make me comfortable

My opinion is everybody has a different disability even if it's a lifetime condition. 

A doctor is supposed to uplift a person even though it's not their intentions to let them down.  But they feel like it's the best way possible.

Some people can walk, talk and feed themselves within years.  You just have to keep Faith and trust in God and the process. 

If a person with a disability is old enough to give consent to get better, they should let them choose, even when it is a serious matter.  They have that right! 

Use me as an example.  The doctor said I would not live or do anything on my own.

I'm 25 years old.  I am walking.  I am talking.  I am a bright, smart, intelligent and independent girl. 

Nobody should feel they have to be normal.  PS: normal is overrated.

Everybody is different and normal in their own way.  A lot of people with disabilities get picked on and talked about.   They are really smart if you give them a chance.

Depression is real!  

Start coming together and communicate with one another. Everybody needs that one friend whether different or the same.

 

Imagine you are back in mid-evil times and you’re on a rack being tortured. Each of your arms are tied the opposite direction of each other as are your legs. Then someone uses a device and begins pulling your limbs away from your body. This is how I feel about the current state of the medical system. I see many different specialists for different issues that I have. I see a dermatologist for my skin issues. I see a general practitioner for monitoring my blood pressure and other things. I see a gastroenterologist for blood issues. I see a vascular doctor for the swelling in my legs. All of them are good at their job and their specialty. And most of the time, I’m treated well.

The problem is, they don’t talk to each other very well. For example, my regular physician would talk about my low blood count every physical, not realizing I was already seeing a specialist for it. I have often wondered if the swelling in my legs has to do with the blood issues. But, when I ask I’m told I have to ask a gastroenterologist or hematologist. All of my physicians should be working together to look at me as a whole person and figure out what is best for my health. This lack of communication has delayed my healthcare many times, and I know I’m not alone.

So imagine, imagine my dermatologist is my right arm, my gastroenterologist is my left arm, my general practitioner is my left leg and my vascular doctor is my right leg. Right now they are all stretched out and far away from each other, So how can the whole body that is the healthcare system work properly? If they would come closer together and work together the body would ease and better serve me, the patient.

 

• My family medicine physician has been attentive to my health needs. Whenever I needed a piece of equipment, he signs a prescription for me to get that piece of equipment, even if the supplier calls him about it.  When I needed to be on blood pressure medication, he put me on Norvasc, which was the same medication they used with me when I was in the hospital for gallbladder surgery.  Whenever I needed an immunization, if he has it in his office, he would tell his nurse to administer the immunization for me.
• One day, when I was told that I could not ride the school bus, my pediatrician wrote the superintendent and told him to get the bus drivers CPR training and told the school system to hire assistants on the bus.
• One day when I was in my pediatrician’s office, he was concerned that I might have meningitis because there was an outbreak in the Williamsburg area, he suggested I go to the local hospital to get a spinal tap. When I arrived at the local hospital, they performed the spinal tap and they charged us an emergency room fee.
• During my sophomore year, I twisted my knee after my special education assistant was told to perform physical therapy on me. They took me to the hospital from high school and they put me on some IV medications to relax the muscle.  My orthopedist told me to use hot towels to relax the muscle.  My pediatrician called to check on me a couple of days after I left the hospital to check on me.
• When I was about to start kindergarten after preschool, the director of special education wanted me in the severe and profound class. My parents wanted me to get a mainstream education.  My pediatrician suggested that I get a private, independent, neurological evaluation done through a neurological agency.  I got the evaluation performed and the school division put in my individualized education plan for me to have mainstreamed classes and a paraprofessional to help me get past my physical disability.
• I established a friend relationship with my pediatrician. When I was too old for pediatric care, I still stayed in contact with my pediatrician through e-mail while he was going through his lengthy battle with leukemia and end stage renal disease.  We talked until his death.

 

In the fall of 2019, I began experiencing a variety of symptoms that included swollen ankles, bloating, decreased appetite, feet swelling, and started noticing that my stomach was protruding more than usual. One day, my mother came over to my house for a visit. And she noticed that my stomach was protruding more than usual. She then touched the area and said something didn't feel right to her and she suggested I make an appointment with my doctor. A few days later I went to the appointment and my doctor asked me what were some of the issues that I was experiencing. I explained my symptoms and mom shared her concerns with him as well.

Upon hearing all of this information, my doctor proceeded to do a quick exam on me. During this process he listened to what I said made me feel comfortable during the examination and directed all questions to me personally. This made the process much easier to be a part of and I appreciated his empathy, professionalism, and genuine concern for my well-being. After the exam, my doctor concluded that I had a hernia that needed to be repaired surgically. He went on to explain the process of hernia repair step by step and then made a referral to a surgeon for further examination.

A week later, I had an appointment with my surgeon who would ultimately do the surgery that I needed. My experience at this appointment was great because the doctor took time to speak to me directly, and patiently explained the treatment options that would help me feel better and how the process of the surgery would be done.

In February of 2020, I checked into the hospital for my surgery which was an outpatient same day procedure. All medical staff that I interacted with that day treated me with the utmost care and made me feel like I was in good hands. They took time to address any questions I had and supported me when I felt scared about going through surgery again. I've had many surgeries throughout my life. But still get scared from time to time.

A few hours later, I was in the recovery room. I woke up and started to feel disoriented from the anesthesia I was given. Medical staff during this time were very attentive, kind, and professional. My nurse that was in the recovery room with me reassured me that the surgery was a success. And provided me with some water and stayed  with me until my mom came to pick me up from the hospital.  I went home and recovered for the next week until my follow up appointment with my surgeon that performed the surgery. After her examination I was told that the surgery was a success and that my surgery marks were healing beautifully. I had a few more follow up appointments before I was given the all clear and I felt better and the problem was resolved thankfully.

 I am grateful for my medical team which involved everyone in the process that included my doctor, the surgeon that performed my surgery and the hospital nursing staff that made sure I was OK and listened to me directly and honored my feelings concerns and took time to genuinely listen and empathized with what I was feeling. I am fortunate that in this experience, all medical staff treated me with genuine concern, empathy and professionalism.