What I'm Grateful for in Life With a Disability
I have done a lot of complaining. Over the last 10 years since I became disabled, I have lamented about my experiences with negligent ER doctors, abusive nurses and indifferent care aides. I have bemoaned lack of accessibility, lack of representation and systemic ableism. I have bitched about the cost of equipment, inadequate disability assistance and negligent nursing/care facilities. I have spoken up, spoken out, written articles, given speeches and found creative outlets to express my angst.
I feel that all of this is important in spreading awareness, encouraging understanding, and supporting the disability community. However, in my rush to point out the failings of society, I often forget about the other side of my story: The people, programs, and systems that worked (and still work) quietly in the background to ensure the smoothest path forward for me.
About a year into my hospital internment, my mother handed me some paperwork and a check.
“What’s this?” I asked
“Your monthly ‘comfort allowance.’” she said, “You’re on Disability Assistance from the government now.”
While I lay in my hospital bed, battling to recover, even before I was fully able to advocate for myself, there were people working on my behalf. The hospital social worker had been busy filling out paperwork, making applications and preparing for my eventual transition back into the community. Her goal was to prepare the important basics (finances, housing, equipment etc.) for me so that I could focus on physical and mental recovery moving forward. Today, my ABI program social worker ensures my housing, personal care, basic needs and financial assistance continues.
I feel fortunate and grateful that I rarely had to face the stressors many people with disabilities must face in order to have their basic needs met.
Programs and Facilities
After 18 months in the hospital, I was transferred to GF Strong Rehabilitation Center for intensive rehab for 10 weeks. Then I was placed in a social program for ABI survivors, and was transferred to a group rehab home at Connect Communities. I lived there for almost 2 years before transitioning to my current residence, a Family Care Home (my own suite inside my caregiver’s home, where she lives with her husband and two sons).
Each time I transitioned, my medical team would meet with me to discuss my needs and options. Then they would go and prepare it all for me. Each move went smoothly and most of the staff were friendly, welcoming and gentle. Each new residence had been prepared with my needs in mind, and staff had been educated about my medical history and conditions. Each facility provided me with the next step in my recovery, helping me to physically and mentally heal, regain independence and rejoin society.
I feel fortunate and grateful that I live in a country where there are these kinds of programs and facilities available, along with the people who tirelessly work behind the scenes to make it happen. And all of it free of charge for the patient.
Case Workers and Occupational Therapists
These people are crucial to my continued good quality of care and my access to necessary equipment. As most disabled people know, living with a disability can be time-consuming hard work. Any time we require equipment or assistance of any kind, there are phone calls to be made, paperwork to fill out, doctors prescriptions to obtain, specialists and therapists to see, measurements to be taken, appointments to be attended, pre-authorizations to be granted and so on.
Whenever I need new equipment, a new therapy, or I want to explore new avenues and interests, my case worker from S.T.R.I.V.E Living Society (a Ministry program for ABI survivors) is there for me. She will find information, send me links, arrange an OT, or whatever she can do to help me carve out my path to my goals.
Obtaining equipment (eg: a custom backrest for my power wheelchair) and then the financial assistance from insurance and/or the government can be frustrating and difficult. That’s where my OT is invaluable. She arranges the meetings, sets the appointments, fills out the paperwork and communicates with all parties involved. Because of her, I am free to focus on living my life without many off the challenges that disabled people in other parts of the world face regularly.
I feel fortunate and grateful that the citizens of my country are willing to pay taxes in order for me to receive the assistance I require, and the staff that makes it so much easier to obtain that assistance.
I have been with my current caregiver for almost eight years, and I can’t imagine how I would have fared without her daily commitment, patience and kindness. She helps me with all the tasks required for my basic needs and housekeeping and so much more. In the beginning, when I was still rehabilitating, I called on her many times throughout the day for a whole variety of reasons, and she would accompany me to all of my meetings, appointments, and outings.
Because of her calm, kind dedication to my care, I felt safe to adapt my new life and explore further possibilities. As a result, my confidence increased and I gained independence in leaps and bounds. Today, she still helps me with my basic needs, housekeeping, and tasks I’m unable to accomplish on my own, but I am far less dependent on her, and I have the confidence to attempt things on my own before ringing for help.
I am grateful that there are people in my community that are willing to do the often difficult, sometimes thankless work of providing quality care in order for people to continue to live and grow.
There are sacrifices, of course, and hurdles. I am married but unable to live with my husband, and even if we were able to cohabitate, our government assistance would plummet. The process to obtain equipment is extraordinarily long, and requires proof, prescriptions and forms signed by doctors. Paperwork and review processes for funding are extensive. Yearly disability reassessments are frustratingly tedious. Not to mention always having to comply with the rules and regulations of long-term care and government assistance (eg: providing a note from my doctor asserting that I am capable of administering my own medication).
Despite these things, I am trying to maintain a sense of gratitude because I am acutely aware of my privilege living in a country with universal healthcare and social services. There are many disabled people throughout the world who cannot afford their health care and medications, who do not have access to mobility or accessibility devices, who do not receive financial assistance and must rely on their family for care, who live in institutions or squalid conditions because there are no other options.
I am certain that I will continue to complain and discuss society’s failings in order to spread awareness and help encourage change. But I feel it is equally important to recognize and be grateful for the people, programs and services that have improved my quality of life. What are you grateful for?
Getty image by Victor Tongdee.