Today’s post is not about a particular issue in the news. It’s about an observation I’ve made over time. A perspective I’ve gained from going from working full-time in fairly decent paying job, to becoming a full-time, stay-at-home caregiver for my son. It’s about the way advocacy seems to only work for those who can afford it.
Here’s three examples:
“Awareness” campaigns – beautiful items produced and sold to proclaim pride: t-shirts, jewelry, and a host of other gadgets that are displayed during campaigns to raise awareness. Do those who cannot afford the luxury of these items over the necessity of food and medicines have less “pride?”
The ABLE Act – a positive step forward to be sure, but in reality only benefits those who can afford to save money for their loved ones. Those who live paycheck to paycheck are not helped. The $2.1 billion budget to pay for this legislation over 10 years will have to come from somewhere. Lots of advocacy time and effort has gone into getting this bill passed.
Closure of sheltered workshops – who will be the most affected? Those who lack the resources to provide full-time job coaches, or alternative activities for their loved ones. Those who depend on state funded Medicaid waivers. Families who will be forced to limit their own employment options to stay home with their loved ones.
This discrepancy is to be expected. You can’t possibly help all people in every attempt at change. What worries me is the privilege of some being used to create change that is hailed as helpful to all, when in fact it can be of little consequence or even detrimental to those on the lower end of the socio-economic scale.
What worries me is that people within our community, even our paid advocates, can ignore those less fortunate when they design programs and decide which causes to advocate for. The non-profit groups who rely on donations to survive have a vested interest in supporting the causes that will keep the coffers full. Where does that leave the rest of us?
I can only hope that social media will eventually provide a voice and point of collaboration for those who aren’t typically heard.
The question remains – will anyone listen?
My 2 Cents:
Our lack of compassion for those who may have less contributes to the overall image of disability as a burden on society. If we can’t figure out ways to help all those in our own community, how and why should we expect others to? I’m not saying that progress should be deterred if it doesn’t help everyone. I am suggesting that we broaden our thinking to include advocacy for things that affect the majority, regardless of income. Nationwide background checks for personal care workers – whether they are hired by Medicaid waivers or private income would be a good place to start.