User1st’s Spotlight interviews highlight individuals who have advanced the rights, opportunities and boundaries of what was thought possible for individuals with disabilities.
This interview format offers insight about the lives, experiences and contributions of those who look to advance the presence of persons with disabilities in mainstream society.
This feature is on Marcie Lipsitt. Marcie Lipsitt is a Michigan-based education and disability advocate, and the parent of a child with special needs. She is the founder and co-chair of the Michigan Alliance for Special Education, a grassroots advocacy organization that was instrumental in making the state raise the required standards for secondary special education teachers. Ms. Lipsitt is also a national advocate for mental health parity, proud member of the Pediatric Psychopharmacology Advisory Council at Massachusetts General Hospital, and serves on the board of Ariel’s Foundation, an organization that addresses the mental health needs of children with early onset bipolar disorder. Her son, Andrew, is the center of her world and the source of inspiration for her work, as he wakes up every day with a mountain to climb. Ms. Lipsitt is on a mission to make America’s public websites accessible for children and adults with disabilities.
User1st: Hi Ms. Lipsitt, thank you for agreeing to be interviewed. Can you give us a little background on yourself?
Marcie Lipsitt: I was born and raised in Michigan. My mother said that I was born carrying a soapbox. Growing up I thought often about fighting against poverty and for the rights of children and adults with disabilities.
User1st: What did you study in college and what was your first job after graduation?
Marcie Lipsitt: I have a BA in English from the University of Michigan, Ann Arbor, MI. I came close to a BS in Psychology. I thought about law school as a way to further my growing interests in mental health parity, children and adults with disabilities. children in foster care and my overarching passion for public education and special education, until my father asked me to take a detour and work in the family business. I had no mentors but many inspirations. I carry, Henry David Thoreau, Martin Luther King, Lyndon B. Johnson, Emil Kraepelin, Frances Perkins and Carol Bellamy everywhere I go. My first job after college was working in my family’s decorative hardware, plumbing and lighting business and always spending time on my advocacy and activism for children and adults with disabilities. mental health parity, public education and children in the foster care system.
User1st: How did you get involved with disability-related issues?
Marcie Lipsitt: I have a younger sister with severe learning disabilities and ADHD. I fought for her rights as a very young child.
User1st: What surprised you about working on disability issues?
Marcie Lipsitt: I can’t say that anything has really surprised me about working on disability issues. I am fairly pragmatic and bring a brutal truth and reality to all of my advocacy and activism efforts. I have been privileged to meet many amazing and inspirational children and adults over the past 43 years. I have had both positive and negative experiences lobbying for education and mental health issues at both the state and federal level. I guess what always puzzles and troubles me most is the reality that while I believe our children are America’s children and are best served under strong federal oversight, there are many, many people who believe children are served as the educational and intellectual property of their local communities. I am always open to dialogue That being said, I am intractable in my belief that America’s children cannot receive equal educational opportunities without federal oversight and that local control leads to nothing but disparity and inequity.
User1st: How did you decide to found the Michigan Alliance for Special Education, and what are its goals?
Marcie Lipsitt: I founded the Michigan Alliance for Special Education with Karen Barnhart, a parent who shared the same concerns that I did respective to the eroding state of special education in Michigan. Our goals from day one were to bring parents, caregivers and stakeholders together and to lobby for what we believed to be necessary changes to our Michigan laws, special education rules, policies and even our Constitution. In 2008 I Initiated a legislative effort to restore our State Board of Education’s authority over special education in MI. HB 5323 passed our House 88-20 and then stalled in the Senate due to the Senate Ed Committee’s disdain for the BoE. I still lobby for restoration of our State Board’s elected authority over all of public education in Michigan.
User1st: What are some of the more common issues you find with regards to children with disabilities in public school districts?
Marcie Lipsitt: The most common issue is simply that our school districts are not providing a free appropriate public education and meaningful educational benefit is a distant dream for a large percentage of our children with IEPs. There are very identifiable reasons for the eroding conditions for our children with IEPs that include a mismanagement of the one-time American Recovery Reinvestment Act special education appropriation dollars, coupled with cuts in state spending and a delivery system of public education in Michigan that is completely antiquated and has created what I refer to as Yertle the Turtle Syndrome. Michigan has an excessive number of school districts, intermediate school districts and charter schools. We are top heavy in real estate, administrators, administrative staff and utilities. Not enough money is going into classrooms or the education of the children.
User1st: What are some other disability advocacy activities you are involved with aside from special education?
Marcie Lipsitt: I am heavily involved in mental health parity and removing the stigma from psychiatric illness. In January 2010, my husband, son and I were featured in an HBO documentary, “Diagnosis Bipolar: Five Families Search for Answers.” I have done a fair amount of writing, speaking and advocating for brain research, targeted treatments and an overhaul to how we educate children with psychiatric illnesses and disorders.
User1st: What are some often overlooked issues that affect children and adults with disabilities?
Marcie Lipsitt: Children with psychiatric illnesses and developmental disorders are egregiously underserved, as are children who are blind and/or visually impaired and deaf and/or hard of hearing. Children with auditory processing disorders are completely overlooked as are children with low vision issues such as cortical vision impairments.
User1st: How important is web accessibility, both for the disabled and the wider public at large?
Marcie Lipsitt: Web Accessibility is as necessary as the air we breathe. The internet connects people every day. It is a lifeline for individuals who are isolated due to physical impairments, along with the elderly. Web accessibility is a human rights and civil rights issue.
User1st: What do you think are the biggest barriers to the widespread adoption of web accessibility initiatives?
Marcie Lipsitt: There are many reasons that people are not making their websites accessible. First of all, people need to understand enough about website accessibility to know why it is so important. Second, there is a cost factor. I am a non-attorney lay advocate and while some of my families pay for my services, much of my work is volunteer. I am right now making the necessary changes to my website to bring it into full compliance with Section 508 and that goes above and beyond what is required under Section 504 and Title II of the ADA. This is not inexpensive and many advocates and people running small businesses simply can’t afford the expenses associated with making a website fully accessible. Then you have website designers who knowingly sell website packages to school districts and knowing that these websites will be out of compliance with Section 504 and Title II of the ADA pursuant to web accessibility. Personally, I would like to see thousands of school district superintendents boycott the web designers creating inaccessible websites. I have filed close to 400 OCR complaints pursuant to violations of Section 504 and Title II of the ADA due to web accessibility issues and all against state departments of education and school districts. I was initially shocked by the reality that the large majority of state department of education websites and school district websites are incredibly inaccessible to individuals with vision and print disabilities, physical impairments and those deaf and hard of hearing. I have moved from shocked to sickened by the pandemic nature of inaccessible public websites. Federal websites such as Whitehouse.gov, Disability.gov, the USDOE and Office of Special Education Programs (OSEP) are inaccessible and this is just unconscionable.
User1st: How do you feel about the future of web accessibility initiatives?
Marcie Lipsitt: I tell people every day that my OCR complaints are a drop in a leaking ocean. I am optimistic only over the growing interest that my OCR complaints are drawing and from across the U.S. I am saddened and angry that the DOJ has pushed back the requirements for federal agencies to bring their websites into compliance. This is just wrong.
User1st: What do you consider to be your greatest accomplishment when it comes to advocacy?
Marcie Lipsitt: My son and the countless thousands of children that I call my own. I do what I do because children do not ever ask to be born. I will never choose to believe that a child would willingly sign up for a life of challenges, due to disability, illness, poverty and abuse. I fight for children because they deserve no less, and so much more. It is hard to think about accomplishments when everything I hold dear is being destroyed in my lifetime. The latest reauthorization of the Elementary-Secondary Education Act, now known as the Every Student Succeeds Act, has effectively removed all federal oversight and restored local control and I am outraged by this direction in public education. I see special education regressing to pre-1975 Education for All Handicapped Children’s Act. I see no signs of commitment to overhauling teacher preparation programs in America and without that there is little hope of improving the outcomes for our children with disabilities. I was privileged to see the Broadway hit, Hamilton, this past January. Toward the very end of the show Alexander Hamilton says, “What is a legacy? A legacy is planting seeds you will never see grow.” This line has haunted me since the moment it was spoken and simply because this sums up my existence as an advocate, an activist and a mother to my precious son.
User1st: What is a goal you are still trying to accomplish when it comes to advocacy?
Marcie Lipsitt: Oh my goodness, I want to see public education restored to its exalted place in our domestic policy agenda. I want the public education for every child in America to be globally enviable. I want to see our nation’s teacher preparation programs overhauled so that teachers can truly provide evidence-based instruction in reading, writing and mathematics. I want to see every child valued and not one child hungry or without a stable housing. I want to see the commitment to brain research and targeted treatments for psychiatric illnesses, developmental disorders, Alzheimer’s and Dementia. I want to see an accessible America and a nation that embraces disability as diversity.
User1st: What can the average person interested in promoting the rights of persons with disabilities in general and/or web accessibility do to help further the cause?
Marcie Lipsitt: Take one school district and run a web accessibility check and then file an electronic complaint with the Federal Office for Civil Rights. If the average person filed even one OCR complaint against a school district, college/university or library with an inaccessible website, America would be far closer to achieving accessibility for all.