Systemic Advocacy
Is often described as work involving changes to policies and procedures of an organization, agency, or government for long-term social change. Systemic advocacy has been known for supporting the rights of those with disabilities that may present an impaired decision-making ability.
How Georgia’s Small Power Companies Endanger Their Most Vulnerable Customers
"The state’s small electricity providers aren’t required to delay disconnecting seriously ill customers who depend on medical devices, putting lives at risk."
by ProPublica
Do you ever consider how people manage while living with a chronic illness daily?
During the course of two to three years I was hospitalized nine (9) times. Being a single parent with a minor child at home, each hospitalization put a financial strain on my household. Within that same timeframe my utilities were disconnected at least four (4) times.
One of those disconnections lasted three days. I would later find out that my local utilities denied me services which could have led to a fatal outcome. Thankfully, a neighbor allowed me to run an extension cord to her house to connect my life-sustaining heart equipment.
I discovered that many local residents who were also power-dependent had faced similar plights. It was one thing that the limited protections offered by our local utility seemed to be inadequate. It was completely different to learn that they failed to inform us altogether.
Residents of my city-owned utility only have twenty-two (22) or twenty-three (23) days to pay their bill before disconnection; and bills are not rolled over month to month. However, if you were power-dependent and relied on medical equipment such as oxygen or an LVAD to sustain life; then disconnection could be postponed for seven (7) days. Now, this postponement of disconnection was only once for the life of service.
The time to pay before disconnection; and the postponement fell extremely short in comparison to other utility providers. I continued to use my voice to advocate for ADA Reasonable Accommodations to the City's policies & procedures as they pertained to disabled power-dependent residents. Instead of improvements, local leaders removed the same provisions I advocated for.
Sharing those disconnections publicly has been difficult. The unfortunate reality is, that it was a part of my journey. I know the shame, frustration, fear, and hurt that can surround being disconnected. I also understand the need for support. Which is why we will be forming a Pilot Program called PPP (Protecting Power-dependent Patients) this year. Offering utility/electric stipends to a select number of power-dependent residents.
This work is far from over as I will continue my Systemic Advocacy efforts to improve protections locally. Read part of this journey as shared by ProPublica.
Tina
"Invisible Disabilities"
"This heart patient believes she was recently discriminated against by an Indianapolis Metropolitan Police Department sergeant. She said the officer told her she was prohibited from parking in a “handicapped spot” despite the placard hanging from her rear view mirror."
“As a society we’ve gotten out of control with judging people based on their looks,” believes Marsden. “You can’t look at someone and determine what’s wrong with them or what they’re going through. You don’t know my story just by looking at me.”
"Two petitions have been created on MoveOn.org by Marsden, one to highlight the civil discrimination situation and another addressing hate crimes."
“People don’t realize how often this happens because it goes unreported. Some people are just scared because they are afraid of retaliation. I’m not afraid, because if you come after me, I’m going to come back after you even harder,” said Marsden. “We have to stand up as a community.”
by Indianapolis Recorder