A new podcast is up at Who Lives Like This?! and I think you'll find it intense and interesting. Jason and I talk with Josh Fyman whose daughter was diagnosed with Aicardi Syndrome when she was an infant. Aicardi is a seizure syndrome with a wide range of severity, and Josh's daughter is among the most severe. In and out of hospitals for much of her short life, often with life-threatening illness, she only began to maintain stability and health when the Fyman's decided to place her in a residential home. Anyone who is a caregiver to a child with severe disabilities has thought about how to best care for their child, and the prevailing culture informs us that living at home is what is best for that child. What if it's not, though? What if the situation is dire enough that one is forced to make a wrenching decision to live apart from one's child? Josh speaks honestly and eloquently about his own family's decision. My preconceived beliefs about this subject were blown wide open, as was my heart.
|Read more and get the link to the podcast here|
It's a difficult subject -- maybe even the most difficult subject outside of death that we caregivers wrestle with nearly every day. It never goes away, actually, yet morphs into truly existential questions. Who will take care of her when I can't do it any longer? Who will take care of her when I die? How will I do this and for how long can I do this? Will I be able to afford to take care of her for the rest of her life and mine and what are the costs?
Here's the bottom line. We live in a country -- a world -- that pays short shrift to the lives of persons with disabilities. Where we live, even down to the actual state in this wealthy, enlightened country, determines the level of quality of our healthcare. We have laws to prevent discrimination against the disabled and to ensure their freedoms and dignity, but we are forced to be vigilant in defending those laws in an increasingly transactional world.
Anyone can acquire a disability or become disabled at any point in a life. Recognizing this is an important step in removing the fear of the Other. You know what I'm talking about.
What can you do to help? You can participate in our political system by writing and calling your representatives and holding them accountable to their disabled constituents, especially when leaders in the disability community give you the heads up. You can pay attention. You can reach out to disabled persons in your own communities, get to know them and include them.
You can listen to these podcasts and stories, help support caregivers' efforts to make the lives of their children and families better. You can watch this astounding video that smacks of hard truths.