macular degeneration, macular, diagnosis Knowledge Is Power – My Macular Degeneration Journey/Journal

Knowledge Is Power

I talked to a human being today. Even better, he was a helpful human being. His name is Mike and he works for Houghton-Mifflin-Harcourt (HMH), people who may have just become my favorite publishers. If I didn’t think Mike was somewhere between a son and a grandson in age, I would be in love.

Mike sent me an email about getting the materials I need in digital form. He put his first and last names on the email. He even gave me a number to call and when I called it, he answered the phone himself! Mike even helped me complete one of those pesky request forms and promised to help expedite my request. Like I said, HMH may now be my favorite publishing house.

Mike also said – be still my heart – HMH was going to copy the materials for me and provide them without charge. He said mine was a ‘Chafee request’. Even though they are, of course, wonderful people at HMH, the Chafee Amendment together with the Americans with Disabilities Act (ADA) say they have to accommodate me.

Let’s start here. So what is the Chafee Amendment? Passed in 1996, the Chafee Amendment says “it is not an infringement of copyright for an authorized entity to reproduce or distribute copies or phonorecords of a previously published, nondramatic literary work if such copies or phonorecords are reproduced or distributed in specialized formats exclusively for use by the blind or other persons with disabilities.”

It has been decided in the courts that this amendment to the copyright laws in concert with the Americans with Disabilities Act allows libraries and other ‘authorized entities’ to make works in an accessible format available to qualifying patrons. If the ‘authorized entity’, a term that is still in dispute about its exact meaning, makes an alternate form copy of any published work for a disabled person, that entity should not run afoul of the copyright laws.

The ADA says that the alternative form is essentially guaranteed to the disabled consumer under the law.

Of course, there are certain stipulations, such as your having to have purchased the print copy of the materials and the copies being made must be accessible form copies for the exclusive use of someone with a documented disability. But within the limits of those stipulations, publishing houses would have a hard time suing for copyright infringement.

So how does the Chafee Amendment to the copyright laws relate to ADA? In 2010 the Effective Communication laws were passed. These are actually amendments to the Americans with Disabilities Act and relate to accessibility of all forms of communication. This is whether or not the communication is with a government agency, business or nonprofit agency serving the public.

Effective communication means that communication with people who have communication disabilities – including trouble reading standard print – is to be as effective as communication with persons who do not have disabilities. Covered entities – I think the US government loves that word ‘entities’ – such as lawyers, doctors, and all other sorts of businesses and service providers must provide auxiliary aids and services to communicate with individuals who have communication disabilities.

For me, this means I am pretty much guaranteed by law to be given digital copies of the materials I have already purchased in standard print form.

Granted, I have been made to jump through some hoops, but in the end, alternate form accessible materials are my right as a U.S. citizen.

For you, it may mean getting a textbook in an accessible form. Or a contract or your medical records. All of these must be made available to you in a form you are able to access and understand. Information cannot be denied you simply because you cannot read standard text.

And considering that – in the words of Scholastic Rock – knowledge is power, being able to access the information you are entitled to is a very good thing.

Written April 2016.  Reviewed September 2018.

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