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Incredible Resource: “How to Get On” Website

In searching for the answer to a question about Section 8 housing posted on my AskHarry.info website, I came across a phenomenal site providing hands-on information about all aspects of living with a disability: How To Get On. It describes itself as a “self-advocacy guide for anyone who is homebound or bedbound” in the United States with the goal of assisting users in having a “great, disabled life.”

Covers the Gamut

The site’s special focus is on people who suffer from Myalgic Encephalomyelitis, more commonly known as Chronic Fatigue System (CSF), but is useful for anyone with a disability or who is assisting someone with a disability. Topics include:

  • Social Security benefits
  • Subsidized housing
  • Applying for home aides
  • Managing home aides
  • Disability accommodation
  • SSI rules and regulations
  • Financial survival if you’re poor
  • How to get professional assistance
  • Getting out of debt

This is only a partial list. In each topic, the site drills down to practical questions. For instance, in the SSI (Supplemental Security Income) section, the includes all the basic eligibility information, but also addresses:

  • What if I’m married to someone with income?
  • How to apply for SSI without falling into quicksand
  • How to handle an SSI interview
  • How to own two cars
  • What happens if someone gives me a free place to stay?
  • Can I start an on-line fundraiser?

With a Sense of Humor

The site posts are written in clear English rather than legalese and with a sense of humor. One of its sections that I particularly like is its Sleepy Girl Video Festival which contains links videos created mostly by people suffering with Chronic Fatigue Syndrome. I love the one created by “Yulia” explaining CFS to the “perplexed friend or family member.”

Who Was Lily?

According to a counter on the site, it is closing in on 17 million hits. But it was difficult to discover who’s behind it. I came across a guest post by “Sage.” Other “spoonies” contributed. The Video Festival was curated by Emily, Lily & Vicki, “three girls with ME who like to watch videos.” There are tweets from Lily @SleepyGirlGuide. After some digging, it appears that Lily was Lily Silver who suffered from CFS. Sadly, according to a Reddit post, she passed away in 2022. A Kudoboard about Lily states that some of her online friends are continuing to maintain the site.

The colorful art on the site is contributed by Robin Mead and Elizabeth D’Angelo.

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