My Path to Stage Lighting

Now that I have some experience in lighting design, I would like to share what I’ve learned about running lights live. I am starting to explore possible pathways and technologies that I could possess for larger events.

Stage lighting is the practice of creating stunning visual displays and effects to engage audiences and set the mood and tone of a live experience. I spent the last couple of years doing all the programming for a show that took place at the FitzFest music festival on May 20th, 2023. It’s fun and a lot of work. I designed and created a bunch of scenes and chases that are saved and played back.

Setting up stage lighting is not as easy as you may think. When I started setting up lighting fixtures, I first looked over the user manuals and read the instructions carefully before I hung them around the room. I had to make sure I got the correct DMX cables to plug in the fixtures so that the DMX input is working properly. Stage lights can be mounted directly on a DJ truss or simple light stand depending on the amount of space it takes in a specific location. I have a 15-foot-long aluminum truss on the back and two T-Bar stands on the front of stage that fit the number of lights I have in the setup. 

I use a DMX-512 console called the OBay 70 controller which allows me to map the scenes with multiple channels (color, brightness, strobe, sensitivity). It is MIDI-competible and easy to use with my foot piano. This type of equipment has helped me be able to know which scenes to select and what key it is on.  Since I cannot operate the console itself with my weak fingers, I’m lucky enough to do it independently with the MIDI pedals and rely on assistance to turn the power on and off.

"Stage lighting is the practice of creating stunning visual displays and effects to engage audiences and set the mood and tone of a live experience."

Each scene is divided into separate fixture groups that come together at the same time. For instance, I have several par cans, 12 moving head lights (both spot and wash), and the Chaucer DJ Mini Kinta and Swarm 5. Some of them are from ADJ and other companies like SHEHDS and U’King. I also use a fog machine that releases fog into the air to make light beams more visible.

Common effects in Stage lighting include flashing, color changing, and side movements. If they are sound activated they have the capacity to sync the music as long as the audio gets picked up. When they are not synchronized automatically through DMX I am capable of operating the light show manually with MIDI so that they are considered sound-active. 

 Alex demonstrating Apache Rose Peacock Midi Pedals

I attend many professional live concerts and local gigs with lots of lights run by a licensed technician that operates the system from the backstage to provide a wide variety of advanced audio/visual effects. I would be interested in learning more about the role of a licensed lighting technician and how they can be designed/set up for event productions.  When I did the research on concert lighting, I got a long list of top production companies that provide audio and visual equipment for events like this. One of these that inspired me is the All Stage & Sound Company that offers a wide range of services from mobile stages and dance floors. The YouTube videos that show how the job is done were useful to me as well. My favorite was the one featuring Mark Cunniffe who was chosen to light Ed Sheeran’s latest concert tour.  Studying this type of stage lighting inspires me and makes me hopeful there may be similar opportunities available for me someday. For now, I am considered a “hobby technician” because I just do it for enjoyment while listening to music and participating in jam sessions. The next steps I will take on my stage lighting journey are going to be more structured. I’m even hoping to purchase more lighting equipment and continue the programming that will give me more options for a bigger show.

Inspiring Musicians with Disabilities

 

On May 20th, 2023, my band Dukes and I completed our first gig featuring myself, Pat Shepherd, Steve Fitzgerald, and Jenee Muller-Thym. After two years of hard work and collaboration, I am thrilled by the band’s progress in rehearsals that led to a successful live event.

 

Being a musician and a disabled individual means I am someone who has a unique perspective in representing people with disabilities in the music industry. My disabilities have never slowed my ability to to do something creative. After I received a cochlear implant at the age of six, I realized how well it responded to rhythm and volume. 

 

Because my disease challenges me physically too, I had tried all kinds of instruments to determine which ones work best for me. Since my father is a musician in a local band, Capital Groove, his offer to teach me music was a huge influence on my performing arts journey.  Back in 2011, I received a midi-pedal keyboard from him and started playing along with drums and bass as well as existing recordings played by other artists. Having my father’s guidance on how to play the keynotes effectively benefited my ability to keep track on specific directions while practicing on my own. But because a regular keyboard is technically difficult for me to control with my fingers, I continue to play the piano on a midi-pedal pad as a modification despite limited use of my hands. After loosing my hearing and vision as a child, listening to music and learning to play different instruments throughout the course of my lifetime has helped me develop the capabilities to perform artistic schemes. I spent a lot of time learning chord progressions on a keyboard, which has helped me to master the songs I’ve worked on.

 

Midi-pedals, the instrument that I practice frequently, provides a wide range of variants that are based on sound. Each variant has its own group of notes similar to a regular instrument. The midi-pedal machine reproduces the sound of any instrument to create sound tracks. This way I don’t have to exhaust myself by forcing my limbs to do movements that hurt a lot. I sometimes write lyrics that I sing in the background, and also have found the confidence to record vocal tracks and then synchronize the beats with drums and piano using a looper.  

 

Most evenings I go to the music studio on our property to record and mix background songs that combine tracks together with the help of my father. I use a program called Logic Pro for mixing and mastering which is easy and quicker than some other software applications.  I am currently learning music theory in order to enhance a deeper understanding of major and minor scales that contain a number of notes played. 

 

In my opinion, music is fun and a great way for people to express themselves, no matter what their ability level is. My first show with Dukes went well, and I’m even hoping to participate in more gigs in the future.

 

Proposal to Provide Direct Services for College Students with Disabilities

As I get ready to continue my college education, I realize that there is a severe lack of policies in place to address critical challenges in finding personal supports for students like myself at the university level. Because I am severely limited by my mobility, visual, and physical impairments, I must rely on people to accompany me to school, during class, and back home.  If no one is around to help, I cannot go to school. It’s that simple.  Disabled students like myself face multiple challenges in their educational journey, primarily with equal access. While in public school, we have the IDEA (Individuals with Disabilities Education Act) which is written as Part B of Section 504 of the Rehabilitation Act of 1973. This allowed for people like myself to receive all the supports I needed while in the public school system, so that I could access a Free Appropriate Public Education.  This law made sure that I had everything I needed to access my education, including a Direct Support Person (DSP) / Personal Care Attendant (PCA) to attend classes with me and help me access the school physically.  But once I graduated from high school, this law no longer applied to me.  

 

 

Students with disabilities in recent years are the most likely group to be marginalized and excluded from higher education.  Living with Riboflavin Transporter Deficiency (RTD) has forced me and my family to fight for many things educationally, most recently, in the form of needing to create and find resources with little to no help when it comes to attending a post-secondary institution. Now that I’m enrolled in UMBC and still struggling to find a DSP/PCA, I realize how desperate the need is for colleges and universities to offer direct support services for students with documented moderate to severe disabilities who need them to attend college.

 

As a Social Work major/Political Science minor, part of my mission is to advocate for changes in the law that would require DSPs / PCAs at the college level.  The proposed change would be an addition to RISE Act, which clarifies documentations used in context of higher education to show proof that a student has a disability. Right now, most colleges don’t offer these services and there are currently few resources that would help me find and hire such a person. For the past four years, it has been entirely up to myself and my parents to locate, interview and employ someone to attend college with me; an additional burden that my college peers are not subject to. The lack of support person, in my case and others like me, is a barrier to education and something that I believe needs to be changed.

 

The RISE Act should require that all schools review the documentation of a student’s need for specific accommodations and agree to assign a direct support professional to meet a student’s course schedule without being left alone on campus. Registered nurses and home health aides should be made available to those in need of constant medical supervision. If a student plans to live on campus and actively participate in programs of study and student organizations, it should be the college’s responsibility to ensure he/she not only has adequate access to direct care but also someone to provide personal safety for those who need it.

 

In public school, I was able to enjoy many extracurricular activities and network with my peers, especially with a fair amount of help needed from a DSP/PCA. I was happy with the benefit under IDEA that enabled me to receive mainstream education, even though my parents had to fight very hard on my behalf. Unfortunately, as a college student I have very limited availability of support to be on campus all day and it interferes with my ability to do anything social, which is a significant part of the college experience.

 

The policy changes I will be working toward will include the following:

Grant funding to university student disability service programs for employee training and recruitment.

Contracts signed by a student each semester to demonstrate that he/she agrees to receive DSP services.

 Assurance by the college that a student receives a certain number of hours of personal support during regular class schedule and for extracurricular activities.

 

I am confident that such changes would be life changing and improve the lives of students who have unique disabilities along with the capacity to manage direct care in continuing education and beyond. Equal access to education should not stop when a person graduates from high school.  We need to begin making post-secondary education a priority and go through the process of creating a system where students with disabilities should not have the additional burden of locating and hiring on-campus support to access their educational standards. Hiring a good support worker is an emotional roller coaster which I am aware of because I understand how frustrating it has been for me and my family when there is a shortage of resources for recruiting direct support professionals. The proposed policy changes would break down the barriers by improving access to higher education with more direct support provided at a university level. My greatest wish is to be a regular person like my able-bodied brother who is now a freshman at American University and a full-term student.  If I could receive reliable and guaranteed DSP/PCA support, I’d feel better about my educational experiences and less like an outsider.

Becoming a Better Writer

Writing is a creative form of art that I enjoy besides music and the visual arts. I write all the time as a lifelong communication strategy. I have been blogging and writing articles for years, and have read tons of books and used social media, which have  provided me an opportunity to share stories about my life and everything I saw happening in the world. I find that social media has been useful for people with disabilities who seek support and opportunities to connect with others and tell stories that motivate them to become active writers. 

My mother, who has a degree in journalism, does a good job editing my writing assignments for classes and blog posts that helped me learn to write productively and professionally. In an interview with my friend Trent Tabor, he gave me an answer stating that, “I feel like for one, having taken a journalism class has helped a lot, and secondly, having an Editor in chief who knows other people and treats them with kindness and respect.” He added, “Having a good editor means one who knows everybody and understands them.” Based on the evidence I gathered from the interview, I agreed with him that both an editor and teacher are useful in improving writing skills to publish articles. Tabor and I were officially staff writers this year in the college newspaper, and we had an amazing editor-in-chief and a content strategist who took the time to review and edit all news articles. I have never taken a journalism class before, but I have taken many English classes that offered me sufficient amounts of educational support in learning to read and write properly. 

I feel like the three rhetorical features I use in my writing composition, such as ethos, pathos, and logos are my strengths that draw people’s attention to what I’m trying to say about the purpose of each article. Sometimes I’ve had a hard time comprehending parts of the content I read in an academic level which requires use of critical thinking and deep interpretation of what is being written, based on the author’s point of view. Being able to understand metaphors, vocabulary terms, and context clues is a technical challenge I have faced in language development, so I had to spend more time reading until I got an idea from what I have learned.  Because I’m deaf, it even takes me a bit longer to organize my writing than most people so it helps to work directly with an editor to make revisions before my work gets published. As a staff writer for the HCC Times, the organization uses WordPress to get news articles up to date so I was often responsible for ensuring that the ones I wrote are worth it for the readers. In high school, my speech language pathologist and I met in her office to go over the work I did in classes that involved writing about different things, so she gave me feedback on what changes were to be made and which parts of my writing pieces should be reworded. According to Tabor, he said in a statement, “I think next year, when I start writing more news articles, I think I’ll just get feedback from the editor in chief.” This quote seems really inspiring to me because I can always have a peer editor and use the feedback to organize my writing.  The accommodations I received in terms of speech in writing was one of the most helpful ways to meet my goals in life. For instance, I typically rely on assistance with typing up essays, documents, and rough drafts to stay on my pace. I also use my nose to write on my iPad and computer. In general, I use Microsoft Word and Pages as the main software options designed for writers who are visually impaired. It includes font styles that have to be large enough for me to proofread and watch for spelling mistakes and grammar errors. 

Now that I am a skilled writer, with the progress I made over many years of education and improvement, the next step I would take to go forward is to start writing more often and publish as many sources of mediation as possible. Right now, I want to develop a technique that focuses on promoting advocacy through writing by spreading out a combination of ideas about the world and what should be done to improve the lives of myself and others using the knowledge of diverse fields of study like sociology, political science, social work, and psychology.       

Building Connections on Disability: How Friendships Work for People with RTD

While many people don’t know what RTD is, there are many ways to foster and maintain relationships among those with and without the disorder. The purpose of this article is to explain the importance of forming meaningful connections with individuals with and without RTD by bringing everyone together to increase awareness of disability rights and inclusion.

No matter how RTD has impacted my life, I am generally a believer in equity and justice. But the question people ask is, “does it matter how many friends a person with a disability can have in a lifetime?” A simple way to answer is “no” because everyone has our own sense of who we are as human selves. Family and friendships are important ways to keep us happy, healthy, and balanced over time.

I must point out that some people with disabilities, especially those with severe autism and developmental disabilities, may find it difficult to interact socially with external sources, which results in fewer close friendships and prolonged isolation as they mature into adulthood. For those with RTD, the situation is a lot milder. Some benefit from groups like Best Buddies and other programs that focus on bringing people with special needs together with peers. The biggest thing I can remember is how lucky I was when I made lots of great friends in school due to the support, I was given to participate in extracurricular activities outside of the classroom. Although I was fortunate that these sorts of programs exist in my public school system, I still faced challenges even in these activities. For instance, sometimes people didn’t understand my speech completely or the activities focused more on those with cognitive challenges than physical, therefore activities were sometimes not accessible to me. There are programs exclusively for people with intellectual disabilities that doesn’t present much benefit to me.  Another factor contributing to my obstacles includes my visual/auditory impairment. I have learned to overcome these by being able to lipread and use residual hearing through a cochlear implant at the same time. I must be at least six to eight inches from the speaker’s face, and I eventually ask them to repeat what they say and slow down the timing and phrasing of words when I can’t hear them. As for unfamiliar people, instead of an ASL interpreter I use an app called Otter which works well by transcribing everything that is being said in group conversations.

Because RTD is a unique condition, I face a mix of challenges and opportunities in life. Having a physical disability with normal levels of intelligence is often difficult and isolating. Most programs for people with disabilities focus on those with cognitive or behavioral issues and are not a fit for me.  Activities for able bodied people often do not consider someone with my constellation of disabilities and are not accessible for me either.  I sit somewhere in between the world of the disabled and abled.  I have a strong desire to belong and live life as a regular person, and it’s hard to fit in. However, I am driven and motivated and believe I can use my situation to educate the world about people like me. I value advocacy and have confidence in my ability to bring about change in society around me. I have lots of hobbies and close connections with peers but not as many as people without RTD do. I have several friends with the same disease, and we started a support group on Facebook years ago that involves sharing stories about life experiences with RTD. This network has helped us recognize each other’s struggles to enrich our personal identity, as well as offering advice to both myself and the entire disabled community.

Now that I am an adult and still in college, I haven’t been as active socially as I was in the past. I only have a few close friends from high school, including the one who still lives in my town and we both are able to see each other multiple times a year. The other two moved away so the only way I can still see them is to do  so virtually. Right now I generally hang out with family members rather than being able to go places to meet new friends.  My siblings are totally independent and outgoing now, so I wish I could live like this. While most people my age usually find jobs in the community, I’m unable to pursue the same opportunities due to my physical limitations. Part of the issue is that RTD prevents me from driving alone or getting out of the house without assistance. This makes it a lot more difficult to make friends now than it was in high school. I have some college experience as though it has  taken me years of searching for social opportunities with appropriate peers. I’m currently a part-time student at HCC where I’m never active in a club or extracurricular organization. Last semester I found an opportunity to serve as a staff writer for the college newspaper which made me feel a little better about being active again.  

Dating is another obstacle some people face if they cannot find the right partner because of their disability. It doesn’t make any sense to me because I know there are plenty of people that love them. I am now 25 years old and still single, but I still hope one day I’ll find a partner and places to connect with other individuals with similar challenges and personal experiences.  I tried different dating sites  like Match_ Bumble, and Facebook Dating. However, almost all of them charged me a monthly fee for subscription and there were too many scammers and losers on these sites. Despite feeling frustrated it wouldn’t meet my connections, I prefer looking for love offline as long as I am engaged in activities and the workplace. If community resources are made available and barrier-free, I will have more opportunities in life. I don’t want anything to discriminate or exclude me…I am a believer in activism, and I always understand my rights and try my best to be social and helpful to others.

The next step I would take to narrow connections in life is to find a path. I chose to pursue a career in social work since I enjoy helping others search for solutions to improve their human wellbeing. For instance, I’m interested in working at a local government agency that regulates funds for disability benefits and services like Medicaid and Social Security.

There are so many things people with RTD can do to build strong connections with the real world. As a social worker, I will work hard to succeed in meeting everyone’s needs and break down all barriers. Developing meaningful relationships with fellow social workers can benefit my connections, too.

It’s time to start thinking about possible solutions that may allow people like me to make decisions about the future of social interactions. Friendships and interests in hobbies change over time. There are many ways to be successful including use of technology, learning new skills, and getting to know people who are able to contribute to the same mission. A career in social work is my preferred goal to make a big difference in the lives of at-risk populations including not only people with disabilities but also low-income families who can’t afford education and healthcare for children. To be active in this field I would start volunteering and finding membership organizations to allow social work students to learn the skills and develop communication methods in working with clients and employees. I will try harder to make that happen and continue the efforts to maintain close connections.

Fallingwater

 

On May 11, 2022, I did a presentation in my art class explaining how this original work of art inspires me. I studied the work designed by an American architect Frank Lloyd Wright called the Fallingwater, and created a new version of this work of art with use of my own imagination. It is a vacation house designed and constructed in 1935, which consists of approximately 5,100 acres of natural land around it. The bottom part is filled with rocks and waterfalls flowing through the stream.  The house rises at least thirty feet above the waterways supported by contilevvered concrete. Beneath the surface of the grounds are coal and clay that move up the mountain.

I chose the piece of artwork because Fallingwater is one of the most inspiring places across the globe to millions of people that view its strength of architecture and nature. It is located in Western Pennsylvania which became known as Mill Run. It has been open to the public since late ‘60s as a historical center for guided tours where anyone can go inside the house and observe the surroundings of nature. One thing I liked about the work is that the house and site together formed an image of a man’s desire to engage with nature. This figure is an example of how people appreciate nature as a concept of their daily lives. I am struck by the point where Wright’s partnership with Edgar Koufman was a huge success in developing ideas about modern design and natural beauty.

After the construction of Fallingwater began, the floor plan isn’t the same as in most private homes. It is made out of stone instead of wooden surfaces or tile, with very low ceilings and corner windows that break the box of a house. On the first floor is a compact kitchen, living room, and simple rooms. There are three small bedrooms on the second floor and a study room on the third floor. The chimneys are made to be the highest point of the house.

In my imagination, Frank Lloyd Wright is one of the greatest architects of all time, because he introduced organic architecture as a pharmanon that many artists show interest in the visual arts field. Organic architecture is a term used to describe the harmony between humans and the natural environment. I find these design features interesting because when Wright put together his work he used glass and cantilever as the main elements of Fallingwater, along with a central core for stone and fireplaces. In addition to his work he added sculpture to terraces made of reinforced concrete with corners in right angles.

I’ve always wanted to feel connected with the natural world through observation of Wright’s artwork. Organic architecture is my favorite of all the topics I’ve studied this semester. With that in mind, I’m even hoping to visit Fallingwater one day and take a tour around it. If you were like me, the pieces of advice I would give you are to learn more about his journey and development of architectural techniques that are relevant to art history. There are tons of articles and publications available to read about the architect, so don’t feel discouraged when reading. You can select whichever sources you find that you feel are most accurate to you.

My Return to Campus Life…FINALLY!

 

Tuesday was finally my first day back to in-person education since March of 2020. I had a wonderful time getting to know my classes and the people there. I’m extremely ecstatic about the possibility for new memories and opportunities that will be available to keep me busy. For instance, I’ve recently applied for a position as a writer for the HCC Times Newspaper. It is a college-based organization that calls for students interested in public communications and journalism to serve in the network. If I get accepted, I’m hoping to write/publish articles covering diverse subjects, which include how the lives of people with disabilities have been affected by the pandemic, the benefits and drawbacks of technology versus human connectedness, and the interactions between college and its impact on student mental health and well-being. In addition to my considerable goals for this semester, I’m looking into hosting workshops on the topic of disability activism. I have invested many hours studying existing laws that protect the rights of disabled individuals and would specifically apply to my interests in doing so. Another fun thing that might happen is having the opportunity to attend a special program for young adults with disabilities at the Image Center.

 

Before COVID I had a transcriptionist who took notes for me during class which made the lecture experience successful. However, once the college shut down and operated remotely, I realized the transcription services were not available for me to participate in virtual instruction, which left me excluded from the community. Until recently, the only thing I did was sit there in my dining room and complete assignments for credit and spent a lot of tine alone. Now that the situation has changed and my uncertainty about the future is nearing an end which makes me feel much better about life again. I’m excited to be back in school and do all the activities I enjoy! The last two years were the toughest I ever been through but hope is already on the way.