I am saddened that my commentary on the negative impact I believe Jerry Lewis has had on our broader community seems to have personally hurt you and some others. It’s not intended to hurt or anger any person living with a disability, or their families. It is simply my opinion, which was formed in concert with many others in our broader community, including many people with muscular dystrophy. In fact, the fight against Lewis’ tactics is led by people with MD. My latest blog entry was written with these leaders in mind – often Lewis supporters try to write them off as sort-of fringe malcontents, rather than the highly effective activists they are. I wrote in support of them and their efforts.

Last night I read through all of the comments and was dismayed to see some people seem to equate criticism of Lewis as a personal attack against them or their family. I’m not sure how that connection is formed. It makes me wonder if people who use MDA services can’t imagine a way for the MDA to keep doing what it does well without depending upon a man whose methods have been consistently criticized throughout the years.

Easter Seals no longer has a telethon, nor does United Cerebral Palsy. Nor does any other large disability organization. The MS Society successfully funds research – as does the Christopher Reeve Paralysis Foundation – without resorting to the damaging rhetoric and attitudes espoused by Lewis. This is part of the context from which my criticism of Lewis springs.

I would not dare to minimize the effects of anyone’s disability, let alone the impact a death of a child or sibling has on people. I am dismayed that was read into my words.

I hear you, Mark. You are a family man with SMA who works hard and is a productive member of society. You have been hurt deeply by a disease that stole loved ones from you. You receive help, comfort and hope through the work of the MDA, and through people you meet (such as your wife of 18 years) who are also associated with the MDA. You seem like a great, interesting guy – personal insult against me aside.

I’m not going to stop writing about Jerry Lewis, his impact on our community is simply too great. But I will try hard to remember my words on Lewis mean something different to you and to some others with muscular dystrophy. I trust you’ll let me know how I do with that.

Sincerely,

Josie

one thing jerry lewis haters always seem to overlook is that a huge slice of those who have nothing better to do on labor day weekend but watch tv, wouldn't be caught dead watching the telethon if they were paid to. the influence he has is always overstated. anyone who looks to jerry lewis to help them form their ideas about disabled people ain't thinkin' straight. search 'labor day events' and see how many recommendations their are for staying home and watching ANYTHING on TV. perhaps those who are certain of JL's monumental impact on how crips are seen should treat themselves to a weekend at their local state park next labor day weekend. oh...and don't forget to take your tv with you.

You can not hurt me. But, your efforts could hurt the MDA and I will not let that happen quietly. Lewis haters always say telethons hurt the disabled community. Yet you offer no evidence aside from whiny opinions. The MDA does nothing but support its little corner of the disability world, FOR FREE. You mention other organizations that don't and can't offer the free services the MDA does. Activists eat,sleep and breathe pity. You see disabled people being helped, via a telethon, and you see pity. I see hope, caring, and understanding. My MD hasn't hurt me, it has made me who I am. You can hate Jerry Lewis if you want, that's your right. Just stop blaming him for all your problems without evidence beyond your opinions. I thank you for the time.

Mark - The best evidence for the inefficacy of the telethons to enact meaningful changes in policy and public opinion was the Harris poll conducted in 1991, which had 92% of people without disabilities feeling admiration for people with disabilities for "overcoming" their hardships, and 75% feeling pity towards those with disabilities. The telethon's old message merely reinforced these preconceived notions by the non-disability community that people with disabilities need to be catered to, pitied, and admired for simply living their lives. If you want the non-disability community to understand that "My MD hasn't hurt me, it has made me who I am," getting away from the old message is a priority. Empathy, or "hope, caring, and understanding," can only occur when both sides have mutual respect and dignity for each other, which this poll clearly shows is not the case.