I am Alison Hayes, and have spent most of my adult life with the label of ‘disabled’ and collecting social security disability.
This blog is built around my experiences: things I have learned and perspectives I have gained in living with my condition.
I want this to help others who have been in similar positions to find more joy in day-to-day living while improving their quality of life one step at a time.
I freely acknowledge that I have lived through all of this with many privileges: I am white, well-educated, and have loving family members who have been in a good enough financial position to help me out of the occasional financial issues I did hit.
Due to that support and through my own careful planning, I have remained clothed, fed, sheltered, and insured through my life, and so have been able to focus on planning and caring for myself, and have had support when things have gotten challenging.
I know many people have not had these opportunities, so I want to help others to improve their life quality using my knowledge.
My chosen life partner, Al, broke his hip nearly a year ago, and so has gone from being employed, to being medically needy, in chronic pain, and medically interesting(he’s a bit young for osteoporosis, which is what caused his acetabular hip fracture when he fell).
I have been his primary emotional and medical support, with my family, and his, providing financial and logistical support for us as they have been able to. I am deeply grateful to both of our families for helping us through this very difficult time.
I also was reminded through many conversations with Al, that I have a lot of knowledge about the healthcare system, medical needs, mindset and psychology, and many other factors that have been essential for helping him.
I have recognized that it also would be very helpful to anybody else dealing with a debilitating condition and has not shared in the advantages I have had.
I also think through many of these things in a very detailed and thorough way, and have practice searching for information I don’t instantly have.
My goal with this blog is to support others through the physical and mental stresses caused by disabilities.
These stresses include being even more of an outlier in society, fatigue and energy issues that often accompany our conditions, and tight budgets/financial limitations, which many of us also need to live with.
There are also indirect problems: not conforming to physical, mental, or emotional expectations of society, being expected to be a victim(or to be an inspiration), fatigue from consistently needing to either explain our needs, or having assumptions made about us, and the additional financial costs we bear in the form of doctor’s appointments, medications, assistive devices, and way too much time trying to sort out health insurance details.
We struggle when so many aspects of our lives don’t fit societal expectations.
Deeper awareness and understanding
I am aware of both my privilege and the ways in which I am more vulnerable.
I am bisexual, which is an orientation not commonly understood or respected by straight society, or by the LGBT community itself.
I have conditions that are often referred to as ‘invisible illnesses'(depression and anxiety) and when I am not symptomatic there is no indication of physical limitation.
I also have experienced the assumptions that people make when they do see me symptomatic.
The learning I have been doing on blogging has a lot of heteronormative assumptions around it, from the instructors primarily being white women to the assumption that most of the audience is white, female, and wants to stay home with her children. There is also a standing assumption that she has a husband that she will need to convince to support her in her blogging. All of those assumptions have been bothering me, and have reminded me how much of society is unaware of the diversity that surrounds us.
I also want to help people through the mental and emotional effects of being on social welfare programs and other need-based supports.
Even while they are appropriate and necessary for our survival, the application and admittance process often has a steeper price than we are aware of: in the form of learned helplessness, of damage to our self-esteem, and damage to our belief in our own capabilities.
Most of these programs also remove benefits upon signs of improvement, which not only reinforce that learned helplessness but also adds extra pressure and stress to the idea of returning to work, with complex rules and significant consequences associated with slight miscalculations.
Knowing how flummoxed I have been by them at times, I can easily imagine how much worse it might be without the connections and skills to dig deeper and better understand their rules and regulations – especially the twisted, governmental language used in the process.
I want to help others with disabilities recognize where they stand, and how to help themselves to improve their quality of life.
I want to help them examine every aspect of their life and make small but meaningful adjustments to their way of thinking, and how they plan, so that they are better able to handle their emotions, plan for their future, and be able to squeeze all the goodness of life they can, so that they can enjoy their journey, rather than just make it through. I want to do more than just make it through, and I hope to help you find your path, and enjoy the journey!