TOUCHED BY LYME: More comment about school disallowing Lyme teen's photo in yearbook
A Pennsylvania school district is making life even more difficult for a light-sensitive Lyme patient. Family therapist Sandy Berenbaum, who specializes in helping Lyme families deal with the school system, offers her perspective.
Highly light-sensitive Lyme patient Sami Siegel spent her high school years in darkness, with only the glow of a cellphone, since anything brighter triggers seizures. (Read more of her story here.) Though she’s completed graduation requirements, now her Pennsylvania school district won’t allow her photo in the yearbook. Their reasons sound bureaucratically tone-deaf at best, and discriminatory at worst. Lyme-literate family therapist Sandy Berenbaum offers the following comments on the situation.
As I see it, having one’s picture in the yearbook is a part of the school experience. In school meetings I attend with parents, the educators express concern about the social and emotional well-being of the student, particularly those who are on homebound instruction for a long period of time. Families develop creative strategies to help their children grow socially, but it is certainly a difficult hurdle.
With a child’s picture in the yearbook, their peers see that they are still around, despite their illness. It might encourage old friends to contact and resume a friendship with the student, and thereby promote their social well-being. It also cuts through some of the loneliness the student is experiencing, and helps them recognize that, despite their limited functioning, they are, indeed, a part of their graduating class, after the hard work they have put into reaching this milestone.
It therefore seems appropriate to me that the 504 plan or IEP include accommodations for their yearbook picture, taken by means that they can tolerate. It could come under the social and emotional goals reflected in the plan. The student’s inability to have their picture taken the traditional way is, after all, a problem generated by their disability, and the accommodation arises from that disability.
I realize that there are bodies of education law that govern what goes into 504 plans and IEPs, so if the school objects to this type of accommodation, parents may wish to pursue legal advice. However, if the school and the parents do come to an agreement, it may be a way around the school’s dilemma about their contract with the photographer.
Learn more about Sandy Berenbaum at her website www.lymefamilies.com.
I think that this is so retarded I cant even begin to understand how this is even an issue.
Dear Pennsylvania school district , Is your head too far up your ass these days ! What is your problem , this is a disease contracted though a tick ,How about if one of your children got this, would you still feel the same , Give the girl a break and allow her damn picture in the yearbook ! she should be considered a hero in the matter , against all odds she has still compleated high school !
this makes me so angry !
There is simply no valid excuse to not allow her picture !
sincerely
Becci Harrison
Seattle,wa
Becci: Please reconsider how you use the word "retarded." You are condemning the school for insensitivity and discrimination against her because of her condition by disparagingly using the name of another condition.
I think this such a beautiful picture. What is the problem? I wish the school district would explain the issue. We are all different, is the problem that the picture is different? If it is since when did we all become the same! I would like an answer from the board of education.
This is so silly. Really people, put the picture in the year book and move on.
Hello, I think the school is crazy not to let the picture in , in the big picture of the world its NOT going to hurt the school, but it means the world to sami, and it SHOULD. I just started talking to Sami on Facebook, and she is AMAZING, and a wonderful person!, i love u Sami
Thank you Sandy Berenbaum for the article and thank you Dorothy for publishing it.
No doubt about it … Sami has a clear case of discrimination.
Diane
An excellent suggestion to make sure a yearbook photo is part of a student's educational plan. I'm going to remember that one and pass it on to others who may find it useful.
This makes my BLOOD BOIL!!!!!!!!!!!!
our daughter spent 2 years on homebound schooling, and missed her senior year all bc/ of LYME… her friends didnt understand, nor did she tell most of them the fight she was fighting, how can something so BIG hurt our kids, then NO picture? she was bit on school grounds, and they still dont GET IT>
-1 very angry mom ( who has lyme myself) someday someway we will find that cure, and when we do, lord help those that do not believe………….
This IS difficult to understand. Is it the quality of the picture? Is the off-the-shoulder dress? Is it really about a contract with a school photographer?
Bureaucrats can be so thoughtlessly mean in their decisions. I hope this was corrected before the yearbooks were printed.
i would consider this to be discrimination. lyme is a horrible disease. i have had it twice, and the second time was much worse. this girl deserves to have her photo in HER yearbook. shame on you PA. this act is nothing less then heartless. What is wrong with you? She has A disease. she filled her requirements…..im just so discusted with what im reading.
Disgusted. I am a Lyme PAtrient, my middle son had to complete his high schoo through a GED diploma because he was not going to be able to complete graduation requirements before he would turn 18. Allowing the picture of this student it would have proven that she was still around, and recognize her huge effort on keep on qith graduation requiremnets even when isolated from the school population in a daily basais because of a very debilitating disease. This is disgusting, that because the contract with a photographer she can appear with her class. TOTAL CRASS DISCRIMINATION.School district could have had a change in photograper or company.