Ben Mattlin was born in 1962 with Spinal Muscular Atrophy, a condition which is usually fatal to babies if the symptoms show up before six months. But Ben survived, and went on to defy many other expectations for someone with his condition. He went to a regular school and high school before the days when mainstreaming was common, and he was one of the first wheelchair-bound students to attend Harvard. Later he became a professional freelance writer for financial magazines as well as writing about disability issues.
In Miracle Boy Grows Up, Mattlin does not attempt to pretend that his situation was typical of those with a severe disability. In fact, as a child he adamantly did not identify with other disabled kids, even though he was a poster child for the Muscular Dystrophy Association. (He has some scathing things to say about the Jerry Lewis Telethon and the way it portrayed children with disabilities as objects of pity.)
Obviously, since his parents had money, that made a tremendous difference for Mattlin. He never really had to worry abvout money even though he wanted to be as independent as possible. He was able to hire attendants as needed and to afford to attend Harvard even though his accommodations were more expensive.
Nevertheless, Mattlin did face many obstacles that other people were confronting at the same time, which led to the Disabilites Rights movement. Now, we take for granted wheelchair lifts on buses, ramps at curbs, and handicap-accessible public buildings. But as late as the 1970s, there were few if any of these accommodations for those in wheelchairs and other disabled people. In fact, the disabled were not expected to be out in public much and certainly, they were not encouraged to live anything like normal lives.
That Mattlin graduated, married, had children and a career is partly due to the actions of activists that, often, he was completely unaware of at the time.
In Miracle Boy Grows Up, Mattlin never seeks pity or feels sorry for himself. He is telling his story to promote understanding, not to be “inspirational” or present himself as some sort of saint. He is often funny and always eye-opening as he spares no details of the sometimes gruesome, occasionally scary and always extraordinary events of his life.
You will learn things you probably never even thought about about life for the wheelchair bound from this book, including sex, parenting, being in a relationship with a non-disabled partner, and much more. You will also learn about the discrimination that existed until recently and the changing views on disability rights that you may not have considered if you are not disabled or involved with disabled persons yourself.
Miracle Boy Grows Up is a fascinating read that will suit anyone who enjoys true stories about other people’s lives.