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Alice Wong investigates interdependence between the disability and caregiver communities

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I am a disabled person who uses personal assistance for almost every aspect of my activities of daily living. If I did not have paid and unpaid personal assistance (including family members), my life chances and opportunities would look drastically different. Without the usage of Medicaid-funded personal assistance programs such as IHSS (In Home Supportive Services) in California and family support, I know I would have to enter a nursing home to survive.

In my conversations with people in the disability community, we joke and laugh about how we’re like CEOs when it comes to hiring, managing, and directing our services.

Many of us are incredibly organized, creative, innovative, and savvy! The relationships we have with the people who provide home and personal care is the epitome of interdependence.

Disabled people rely on this vital workforce for their very lives and this workforce depends on us as well. When you have a home care provider that’s reliable and respectful, it’s like knowing a unicorn—a rarity that must be treasured.

When a home care provider cancels at the last minute or is over an hour late, the person can be waiting in bed unable to go to work or in desperate need to eat or use the restroom that can be agony. Trust me, I’ve been there and yes, there were times when I urinated in my pants waiting for someone to arrive. But that’s my lived reality.

Clearly, this employer-employee relationship is not typical—the type of work and the level of trust involved creates a very unique dynamic that is under explored and unappreciated.

People with disabilities have value and are more than ‘recipients’ or ‘clients’ who passively use services. Home care providers are more than low-wage workers that lack training and opportunities to advance—their skills and labor have worth that needs to be acknowledged in real (economic) and intangible (cultural) terms.

At this time, the questions that I want to explore in my radio piece for Making Contact are: What does interdependence look like? When we talk about communities and social networks, what are the ties that bind us together?

I plan to profile a person who uses IHSS and their home care provider, asking them what their relationship is like and what their vision is for a more just world where disabled people and the communities of people who provide assistance can support each other while advocating better societal conditions for all involved.

I’m looking forward to working with the staff at Making Contact and learning some audio production skills to bring this story to life!

Author: admin

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