"I Am. . .So Much More Than You See!"

Imagine shopping with a friend on the weekend and your friend is suddenly approached by a stranger who starts whispering to her. As the outsider in this situation, what would you do?  Being the curious person I am, I wanted to hear what the stranger was saying to my friend, so I pushed my walker closer and strained to listen. Unfortunately, I still couldn't hear the conversation. After the stranger left, I asked my friend what the person wanted, and she said the lady was the owner of an Adult Day Health facility for people with disabilities and she thought they may be able to help me. She had given my friend a business card. My friend, who knows me so well, was so taken aback and was truly at a loss for words. While this lady may have thought she was doing the right thing by approaching my friend, she made an assumption about the type of disability I have and that I needed help. Both of these assumptions were made by seeing my physical disability and possibly overhearing my speech ...

Free- this is how I feel when I ride my adult tricycle around the neighborhood.  COVID-19 has been a tough and isolating time for everyone, When I came back to NJ in March at the height of the pandemic, the only way to get outside in the fresh air was to walk. At first, I could only make it a very short distance without having my legs get shaky and feeling like I was going to fall. Eventually, I was able to make it around the block but I still had to stop very frequently to rest and regain my energy. In short, it was exhausting. . . In July, my-parents surprised me with a three-wheel bike. The first time I rode the bike, it was a feeling I had never experienced before. . .freedom and exhilaration. I have a feeling this is how people feel when they drive for the first time  I may have started out a bit too confident when I was riding as I did flip the bike in August after going too fast and making a sharp turn. I think I am the only person in the world who could flip a three wh...

Yesterday was Rare Disease Awareness Day and as a person living with Mitochondrial Disease this day made me reflect on what having a rare disease means. 1. Having a rare disease means taking close to 40 vitamins a day, all prescribed by my doctor, without truly knowing which ones work and which ones don't. 2. Having a rare disease means being lonely sometimes because the "family" of people who are rare like you don't live close by and only get together once a year at the national symposium. 3. Having a rare disease means meeting therapists and other medical professionals who may have never heard of a Mitochondrial Disorder. 4. Having a rare disease means educating people about your disability in terms of your strengths and limitations. 5. Having a rare disease means being uncertain about the future in terms of disease progression. 6. Having a rare disease means being positive and hopeful that one day there will be a cure. 7. Having a rare disease means...

Imagine losing a dog who looked at you like you were the best thing since sliced bread and followed you everywhere. This is what happened to me today and I am absolutely devastated. I patiently waited for a service dog for three and a half years. In that time, we had a dog who was too hyper, a dog who was too short and then we got journey.. . Journey is the sweetest dog I have ever met but unfortunately he made it more difficult for me to walk.  He was way too distracted by other dogs, people and smells. He also did not listen to a word I said because well he thought he was Alpha dog. Unfortunately, with my lack of strength and his need to be in control it made for a dangerous match. However, for the three weeks I had my Journey he made me laugh and smile so much. I hope he makes his new owner as happy as he made me. Today he made the "Journey" to Pennsylvania to be with a Veteran who has PTSD and also needs help with her mobility. Having a service dog for a short...

Have you ever been to the doctor and felt totally disrespected and bullied? Up until this week, my experiences with doctors have been fairly positive. I went to see my primary care doctor for my yearly physical and she was so rude to me throughout the appointment, I literally broke down in tears. I knew the doctor was going to be late because I had been there for my flu shot the week before and waited thirty minutes for her. Therefore,  I asked someone at the front desk to let me know when the doctor gets to the office, so I didn't have to sit in a gown and be cold for 30 minutes. The employee was very nice and told me there was a patient ahead of me, so she had no problem doing that. However, the front desk employee forgot to tell me and the doctor walked into the room, without knocking, to get something for another patient and questioned me about why I was not changed yet in a rude tone. I felt like a child who was in trouble for doing something wrong at school. Not to ...

This week is Mitochondrial Disease Awareness week. Even though the awareness week is only seven days, Mitochondrial Disease is something me and many others with this devastating disease think about and deal with on a daily basis. Every person with this disease is impacted differently but I want to paint a picture for you of what my life is like with Mito. Imagine walking outside and getting progressively more and more tired until you just have to sit down to rest in order to regain your energy. While this can be frustrating, I am lucky that it only takes about a 30 second rest to regain my energy.  Imagine having to look at the ground constantly for uneven surfaces because you know there can be tripping hazards and your vision is impaired so you have to be extra careful. This has become second nature for me and the people who I am with often will warn me of something coming up that I may not see.  Imagine answering the phone at work and the person on the ot...

For me, falling is like dropping in free fall and trying desperately to recover so I don't fall. While I often joke around that I am really good at falling, this past week I took three tumbles that showed me falling is still scary no matter how good you are at it. While a lot of my falls are unavoidable due to my vision and balance, a fall this weekend could have been avoided if a mail truck driver would have used common sense and followed ADA regulations about parking. I was walking out a different exit in my apartment building than I normally do and I did not see a step in front of me. There was a mail truck parked in front of the cutout where I would normally exit the curb. Therefore, I did not realize there was a curb in front of me until I was falling down it.  After I pointed this violation out to my Aunt, she went into a nearby store to tell them about the truck being there. They said to her that they are probably just delivering the mail. My aunt then told them ho...

Would you want to live in a world where everybody is the same? Would you want to live in a world where everybody has the same abilities, strengths, weaknesses and thoughts? I would not want to live in this world because I think it would be so boring. Unfortunately, the physical environment of our world is built with the mindset that everyone is the same and even more unfortunate is that many people in our world still stigmatize disabilities. There are so many things that I wish I could change for those with disabilities in my life and internationally. I wish I could change the stares from strangers and the questions to be more respectful. I was with a friend this weekend who has a physical disability. We were in the lobby of a movie theater and this man came up to her and started asking her all these questions about her injury. Why do people think it is their business how a stranger got injured?   I wish I could change the mindset of potential employers to see every ...

Would you go to a haunted house the day before halloween if you had difficulty walking? If you asked me this question on Monday of last week, "I would have said, "hell no." My coworkers had planned a trip to the haunted house and all day on Tuesday I was back and forth if I should go or not. Around 1:30pm, I told my coworkers that I don't think I should go because I do not want to fall again and I think it will just be too difficult for me. Around 4:30pm, my coworkers came into my office and said that they had been talking and really wanted me to come. They told me they would hold onto my arms, so I wouldn't fall. I still was not convinced that it would be safe for me, so we decided to call the place to find out if the haunted house was accessible. We found out that all but one part was accessible for me and they could walk me around that one part. The lady on the phone said that she would radio down to the people in the obstacle to let them know that I...

Have you ever sat in a movie and had no idea what was going on? This happened to me yesterday because I couldn't see the subtitles when the characters were speaking Spanish. The first half of the movie was in english, so you can imagine my surprise and frustration when the movie changed languages. As I was sitting there cluelessly in the movie, I was thinking about how I will change this experience for others who are visually impaired in the future. My opinion is that the producers of all films should either make the film subtitles in a larger font size or have an option where the moviegoer can wear headphones and listen to the movie in their language.  Even if these accommodations are not feasible, the least they can do is put on the previews and showtime listings that the movie has subtitles. This way I can choose whether to see the movie and sit closer to the screen if I do choose to see the movie.  This is not the first time I have endured this frustration wh...

Shaking hands, pounding heart and breathless speech. This is how I have felt in the past before and during public speaking and it is NOT a good feeling. I struggled through presentations in college and graduate school and eventually just conceded to write every word that I was going to say down in order to calm my nerves. This made my life easier because I could simply read from the paper. However, by the time I got to graduate school a professor told me that I should try to present without reading from the paper because it shows confidence and will sound more natural. For the remainder of graduate school, I tried to speak naturally during presentations. Sometimes it went well and other times it did not go as well. On the eve of completing my master's degree, I produced a presentation that unfortunately I will never forget. This was about a 30 minute presentation and we were being chosen at random to present. I also had been up until 4am the night before preparing for this pr...

"Imagine being surrounded by people who have similar challenges to you and who are fighting for the same outcome." This is what I experienced last week as I attended the National Council on Independent Living (NCIL) conference in Washington, D.C. for work. I felt an energy in the room that was unexplainable as we all cheered for rights for people with disabilities. In one of the sessions, someone said that people with disabilities are not a group that is often thought to be discriminated against but people with disabilities do still face discrimination and we need to fight to end this inequality. As a person with a disability and an advocate for others, I totally agree with this statement as I feel I have faced discrimination in areas of my life and have heard stories of others with disabilities facing the same.  My favorite part of the conference was connecting with people with all different types of disabilities and seeing and hearing about the tools they use to l...

One of my biggest pet peeves is when people speak for those with disabilities because they feel they can't speak for themselves or understand what others are saying. I believe that every person should have the ability to express their wants and needs, whether that be through speech, a communication device or even eye or body movements.  I recently encountered a situation where a family told me that the person I would be working with can't understand. This threw my whole intake off because I am not used to talking to the family of a person without talking to the person I will be helping. I ended up asking the person with the disability the majority of the questions and I believe she understood what I was asking her. While I understand that her family is trying to help her by speaking for her, I believe that it is teaching her to not communicate her wants and needs and one day she will have to live without them.  Additionally, I recently attended a conference and liste...

While I don't want people to bend over backwards for me, sometimes an offer to help would be nice. I was recently going to teach at a local school and as I was walking into the building, some papers fell out of my folder and onto the ground.  I went to bend over and pick them up but I was really struggling to lean down that far. As I was struggling, two people walked by me without offering to help. One was a student and the other was an adult. I feel the adult should have had the manners and common courtesy to stop and at least ask me if I needed help. I was kind of shocked because I know if I saw someone struggling to do something I would at least offer to help them. On a positive note, recently a cashier in a convenience store gladly helped me when I was struggling to see the credit card machine in order to check out. I kept apologizing because I felt like I was holding up the line. He said to me,"You are a customer like everybody else and they can wait." I actu...

What if somebody asked you, "what's wrong with you?" How would that make you feel? I saw this happen to a student in a classroom recently and it made me sad and angry. The situation occurred when we were doing role-plays on self-advocacy. This student is extremely shy and his teacher was trying to role-play with him what he would do if a customer asked him a question when he was working at a retail store. When the teacher did the role-play, the student got uncomfortable when he had to answer the question. This is when the girl said, "what's wrong with you?" The shy student then left the classroom.  I responded to the girl by saying, "don't say that."  However, now I wish I would have said more. . . I should have said that nothing is wrong with him. I should have said that everybody has strengths and areas that may need improvement.  I should have said that everybody is different.  I should have said that "normal...

When was the last time you felt really uncomfortable in your own skin? For me, it was just this week when I decided to quickly stop for dinner on the way home from work. I stopped at "Chick-Fil-A" and honestly wanted to get in and out as fast as possible because I was hungry, tired and had a Lyft driver waiting for me. Instead, when I walked in I was greeted by two kids hard core staring at me and especially my braces. I could feel their eyes on me as I walked into the restaurant, waited in line and proceeded to order my food. It didn't help that my speech was giving me a difficult time while I was ordering. When I was paying, a quarter fell out of my wallet. I didn't see it fall but one of the little girls picked it up and handed it to me. I said to her, "thank you so much, you really helped me." I wanted her to know that she helped me and that everybody needs help sometimes.  I know these kids were not trying to make me feel uncomfortable by look...

When someone tells me I can't do something, it empowers me to prove them wrong. I was lucky enough to have teachers who empowered me in school to reach for the stars and accomplish all of my goals. However, there was one teacher who told me that she didn't think I would be successful in college because of the pace I complete my work. While this was very upsetting to me at first, it inspired me to go to college and prove this teacher wrong. When you tell someone they can't do something, all you are doing is ruining their confidence. One time I asked a speech therapist if I would ever be able to pace my speech without tapping my finger and she said probably not. This really bothered me because one day I would like to talk at a "normal" pace without thinking about it. I asked the same question to the speech therapist I am currently working with and she said the opposite answer. This showed me that the other speech therapist really did not know the answer to the q...

I felt a strong connection as soon as I walked in the room and it only grew stronger as we talked and got to know each other.  My coworker and I recently traveled to a nursing facility for a consumer appointment. As we were getting ready to leave, a staff member asked us what we were doing.   We explained to her about some of our services and she wanted us to meet another resident in the facility. She told us that the individual was young and had a master's degree.  When we walked into the room, the young woman was lying in bed in the middle of the day, which truly surprised me and broke my heart. She told us that she wants to live independently and get a job advocating for those with disabilities.  She had a very similar story to mine in her employment journey. Unfortunately, potential employers judged her based on her disability instead of her skills, intellect and abilities. The way that she looked at me was unreal and she c...

Imagine a world where everybody was accepted for their differences and included in the community. Unfortunately, this is not the world we live in today but I hope one day it will be. I hope one day we can live in a world where there won't have to be "special" proms, "special" education and "special" camps for people with disabilities because people with disabilities will be included in the mainstream community. My coworkers and I recently had a training/conversation led by professors at Temple University about the importance and fundamentals of community inclusion . We also invited partners from the community to come and learn about the fundamentals of community inclusion and discuss ways we can make the Raleigh community more inclusive. This was such an interesting conversation and I have never felt more passionate about helping those with disabilities accomplish community inclusion. I know first hand how being included in the community through ...

"As soon as I put them on, I felt like I could fly!" On Friday, I finally got to try my leg braces on for the first time.  When I stood up with the braces, it was definitely a weird feeling but as I walked up and down the hallway I started to feel balanced and confident. It was such a great feeling and one that I never felt with the walker or the last braces. I honestly feel like I have superpowers when they are on because the shakiness in my legs, when I walk for too long, has gone away and I feel like I can take off in a sprint.  While I wish that we could have come up with this solution years ago, it is all about the journey. If it wasn't for having a walker for over a year. I wouldn't have experienced first-hand how important the Americans with Disabilities Act is for people who need accessibility features in buildings. I also was able to see and accept the helping hand of most people and the rudeness of some.  I am very excited to start this new jou...