Disability

When I call myself disabled, sometimes it’s an explanation for reality or a reason for routine. It’s a guttural release of anger, annoyance, irritation and anxieties. It’s a badass badge honoring strength and determination. Other times it’s a scarlet letter so big and red I can’t control its flare. When I call myself disabled, it’s a flinch, a stare, a questioning or inquisitive glare. Not any more from a passerby’s curious eye than from mine in my own mirror, counting my scars, marks and bruises, and wondering, “Where did this new one on my knee come from?” When I call myself disabled, it’s constant tugging and pulling at my clothes, lamenting the fact that fighting with fabric is sometimes a losing battle; cotton, rayon, polyester and denim don’t always want to sit pretty on my sitting crooked body. It’s why I bought the Get Naked sign hanging in my apartment. It’s adjusting my legs, my spine and my neck, their muscles and bones lit up in fiery pain, so I’m sitting up as straight and tall as I can. It’s wishing to blend in seamlessly with the crowd while hoping to be seen. When I call myself disabled, it’s acknowledging that life with autonomy, choices, experiences and opportunities isn’t an impossible dream, but it is a logistical nightmare. It’s a crash course in creative, out-of-the box thinking. It’s knowing adaptation and problem solving is a necessary, sometimes minute-by-minute part of this life. When I call myself disabled, it’s a collection of experiences continuously tipping the scales between grief and gratitude. It’s grieving opportunities lost, access denied, relationships ended and abilities stolen. But it’s also gaining a healing gratitude for my heart and my eyes and my mind and my voice — that allows me to see the world through an ultra-compassionate lens, recognizing and renouncing injustices or inequalities. It increases my capacity for bonds and interconnections, forever tied through understanding and awareness. When I call myself disabled, it is a fact; I can’t argue with reality. Instead I must surrender to my physical body; no matter if it’s slow, sluggish, riddled with pain and a serious fall risk, it is mine. When I call myself disabled, it is a prideful truth, a deep satisfaction in all I have accomplished and achieved. It is a fear for my future but a celebration of my present. When I call myself disabled, it is a battle cry to the army of disability warriors who surround me. It is a march in solidarity with the millions of people who know the injustice, who feel the inequality and who persevere through the struggle. When I call myself disabled, it is knowing I am more than a label stuck on by opinion; I am me for so many reasons and there is no one else I’d rather be.

After Richard Bagby was paralyzed due to a spinal cord injury 13 years ago, he wondered how he would be able to live independently. First, there were the practical aspects of adjusting to his new physical abilities, and then he faced a new financial reality. Richard depends on state and federal programs that require him to have less than $2000 in the bank and limit how much he can save. How could he possibly afford to live independently, care for his service dog, and prepare for the future? Millions of Americans with disabilities struggle with questions like these each year. In the past, unless they had the resources to set up and maintain a special needs trust, people with disabilities who needed support from government programs were limited in the amount they could save or invest. But now, those who became disabled before age 26 have another option. ABLEnow accounts allow people with disabilities to save and invest without losing essential benefits such as Medicaid and Supplemental Security Income (SSI.) In 2014, Congress passed the Achieving a Better Life Experience Act, (ABLE Act), which provided for the creation of tax-advantaged savings accounts for people with disabilities. Up to $16,000 can be contributed to an ABLEnow account per year (or more via the ABLE to Work Act if the individual with a disability is employed). Any American who developed a disability before age 26 is eligible to open an account. An Authorized Representative such as a parent or legal guardian can open an account for a child with a disability or an adult who cannot manage the fund themselves. ABLEnow account owners can save their own money, and friends and family can also contribute. Funds deposited into an ABLEnow account can be spent on “qualified disability expenses.” Determining what counts as a qualified expense might sound complicated at first, but it isn’t. Qualified disability expenses include basic living expenses such as utility bills, housing, medical treatments, insurance co-pays, transportation costs such as a bus pass or payments on an accessible vehicle, college or training programs, assistive technology, legal fees, service dog expenses, and more. ABLEnow accounts include a debit card to make paying for qualified disability expenses as quick and simple as it would be with a standard bank account. Many government programs require hours of paperwork and months of waiting, but opening an ABLEnow account is easier than you may expect. You can enroll online in just a few minutes. The biggest barrier to setting up an ABLEnow account is lack of awareness — many people with disabilities and their loved ones don’t know this program exists or realize how helpful it can be. ABLEnow is helping to change that by providing a simple, accessible website that makes it easy to get started. Customers can manage their account with ABLEnow’s online tools and top-rated mobile app. An ABLEnow account can help families plan a more secure future for their child with a disability and empower adults with disabilities to live more independently. Learn if you or someone you know is eligible at ABLEnow.com . Disclosure Call 1-844-NOW-ABLE or visit ABLEnow.com to obtain information on the program. Seek the advice of a professional concerning any financial, tax, legal or federal or state benefit implications related to opening and maintaining an ABLEnow account. Participating in ABLEnow involves investment risk including the possible loss of principal. ABLEnow is administered by Virginia College Savings Plan. For non-Virginia residents: other states may sponsor an ABLE plan that offers state tax or other benefits not available through ABLEnow. ©2022 Virginia College Savings Plan. All Rights Reserved.

I am a person with a disability. I have cerebral palsy, am an amputee, and a wheelchair user. In my life, I have had consistency issues — not with creating friendships, but keeping them. Growing up, I would always get close to someone, and we would be friends for a few years but more often than not, our friendships would end without explanation. This happened a lot in high school minus a few exceptions. As an adult now, I am lucky enough to have what I call my “core four.” These are my best friends I have had for some time. Still to this day, after we’ve done something fun together, I find myself repeatedly thanking my friends for spending the time with me or for the fun we had. I used to say it a lot more often than I do now, but I still do it more than average. I have noticed that my mom will always thank my friends for coming over or spending time with me. She does this every time, whether it’s simply a day trip or a weekend away. I can understand why she does it; seeing me constantly have plans I made with friends fall through over the years was difficult, I’m sure. However, it puts my friends in an awkward situation. In their eyes, they are just doing what any friend would do, not something that warrants excessive gratitude. I believe I am good at expressing my appreciation already and they understand how much their friendship means to me. Another reason this bothers me so much is that I can tell my mom only does this specifically with my friends. She does not thank the friends of my siblings who are not disabled. She seems to think they feel bad for me, when in reality I know they are hanging out with me because of the person I am, not because I am disabled. Both disabled and able-bodied people have friendships. I believe parents, caretakers, and society as a whole need to stop glorifying these friendships and treat them just like any other friendship — because that is what they are. I think when we change our perspective and consider how much unnecessary attention we are putting on these kinds of friendships, we can change our outlook for the better. Friendships are friendships and no matter how they come to be or who they’re between, they all deserve the same respect. If you are an able-bodied person, how would it make you feel if your parents thanked your friends for spending time with you?

My daughter has been living with Lennox-Gastaut syndrome (LGS) for exactly 23 years. She’s 25 now. Daily, relentless seizures took over her life and set us down a road none of us even knew existed, let alone thought we’d find ourselves on. 23 years is also the exact amount of time I’ve had to be my daughter’s fiercest warrior. Seizures robbed her of so many things. And it’s robbed her of her voice, so I advocate for her as much as possible. I once started compiling a list of all the roles I’ve taken on over the years to try to help her. All the battles I’ve had to fight. Roles I was never trained to take on, but were thrust in my lap nonetheless. Here are just a few, in no particular order: Emergency medical technician (seizures don’t always end) Ambulance driver (Did you know 911 can actually put you on hold? We’d drive ourselves.) CPR administrator Doctor Nurse Physical therapist Dietician Medical detective Safety patrol officer (I should record “wear your seizure helmet” and just hit play.) Lawyer and estate planner End-of-life planner Advocate Oh yeah, and Mom. Which of these hats I wore in a day depended on whichever way the “seizure winds” blew us. Seizures struck every day, but some days it was only five to 10. Other days, she had hundreds, too many to count. On those days, we were lucky if we managed to eat, get dressed and make it out the door. Eternally vigilant out of necessity, I’d pick up my sword each day and fight our way to the best possible treatments, therapies, and life for my little girl. Most of the time, it wasn’t actually people I was fighting against. Rather, it was unwitting agents in a broken medical system. It’s a system that is definitely not working for patients and their loved ones. It’s failed us many times. Health care providers don’t think it’s working. Payors aren’t happy. The government debates it daily. I keep wondering who the system is working for. I’m hopeful things are changing for the better. It’s slow. Over the last 23 years, I’m happy to report I’ve also become what I hope some would say is a good advocate, not just for my child, but for those that will come after her. Because of my child, I pursued a PhD in neuroscience and helped advance the field of genomic medicine (including helping my daughter). I’ve worked tirelessly to bring the patient voice to all aspects of research, therapy development, health care, and policy. And I’ve met some of the most incredible, inspirational people that give me true, unfettered hope for the future. For the record though, I admit that I do cry. Some days, I just need to drop my sword and cry for just a while. I allow it. I need it. During this time, I send myself to my room (for everyone’s protection) where I am allowed to say anything, be anything, and think anything. I can cry and rage and beat my pillow with that blue baseball bat I keep in the closet nearby. I can kick and scream and yell and bite (just not to any living things). I can cuss like a sailor, get bent out of shape, add insult to injury, bark up the wrong tree, compare apples to oranges, and have my cake and eat it too. I can even say that I hate LGS. I can do all of these things. But my one rule (apart from not harming the living) is I can’t stay there. After my tantrum is over, I must move onward and upward — somehow. I used to feel horribly guilty about these moments, which happen a few times a year now, more often in the early days of her illness. But oftentimes, after these dark moments that I’m not proud of, I emerge with a new realization, a new understanding, and sometimes a new acceptance of this road we have been set on. It’s like I shed an old skin, making way for a new one. A tougher one. It’s purifying. Then, I remember why I fight. I fight for my daughter. I fight out of love for her, as she lives and loves despite her so many challenges. Her bruises, her bravery, her tenacity inspire me. And when the outburst is over, and I’ve remembered my “why,” I can now wipe away my tears, pick up my sword, and get back in the fight. We have a future to change. Keep fighting my fellow warriors.