Entitlement and Charity

So, I’m sure most everyone has seen and used the facebook feature “on this day” as well as “timehop.” Somedays I remember what will come up, like my kids’ birthdays, my anniversary and even some secular stuff.

Today I saw a link where I commented:

I get that this is the wish her son had, but I totally think Make-a-Wish has a valid point. They don’t want their name associated with just anything. At this point, I think her best option is to contact Comedy Central and see if they’d be willing to facilitate anything. And have her kid pick a different wish!

The story here is what I was referencing. In short, the woman’s sixteen-year-old son was selected by the Make-a-Wish foundation and his wish to meet the creator’s of Comedy Central’s show South Park, Matt Stone and Trey Parker. His wish was denied by the organization because of the content of the show in question.

The comments on the thread mostly said, hey, I get that he’s disappointed but Make-a-Wish is within its rights in restricting wishes in this way. Many also advise her to contact Comedy Central or to start a petition or use social media to attempt to contact the men in question themselves. The mom shot back at one commenter who was supportive of MAW’s decision saying that they granted wishes for adults, so why couldn’t they grant this? The granting of wishes for adults is actually not a practice of MAW. I want to believe this woman is confused because the website states that the age limit for the organization is 18. Regardless, there were many alternatives given and several people (including one whose child was denied for being too young and then tragically died days after her birthday) who urged her not to launch a campaign against what is a good organization.

A few brave souls also dared to ask the mother why she felt her son was entitled to any wish, even if he did have cancer? After all, deserving kids are denied wishes all the time and some die before they can receive their wish and a few the organization cannot make come true for various reasons.

As part of the special needs community, I’ve witnessed this form of entitlement vs gratitude with parents when dealing with charitable organizations. “Well my child has [insert syndrome or disorder] so he deserves this!?” This even happens with things denied children without special needs routinely. It is disgustingly competitive, especially when dealing with autism, because there are so many children and so little time and funding.

An organization near and dear to our hearts, Surfers Healing, recently announced a huge change to their camp sign-ups. Before the method was, as Edna Mode from The Incredibles would say, a, “Luck favors the prepared” method. Meaning sign-ups took place on a certain date at a certain time and parents would set multiple alarms and be refreshing the website for an hour before sign on time and then once the link opened type as fast as their fingers would go. Camps were filled in less than 10 minutes. For the past several years, we have gotten in every time.

This year the method is by lottery. Parents have a full week to get their child’s information in online and then a computer system selects randomly the required number of participants (with a certain percentage being first-timers) and puts the rest of the registrants on wait-list. And registration for multiple camps “just in case” the child gets into one is no longer highly discouraged but outright banned. Parents of kids who have never participated are in high praise of this system. Those who have in the past admit it is fair but there is a rumble of anxiety and upset as some of them fear telling their child with autism that this year they won’t get to surf. We’ve decided we won’t attend if we don’t get in as Shelby will not understand why we are there if she is not surfing. It’s no ill will, it’s just making life easier for her.

I am waiting more anxiously to see how parents react to the lottery system. In all honesty, fair is fair and this is the way it probably should have been done from the beginning. I am curious, however, to see the reactions not only of parents of old-timers, like me, whose children do not get in but also of parents who could not get their child in previous years and for whom the lottery doesn’t work first time out of the gate. Will they still feel it’s a fair system when, in the ends, it treats them the same way the old one does? Statisically, it’s going to happen, someone stymied by the old system will still get left out of the new one. And this overwhelming, “our kid has autism too! he/she deserves this” entitlement will rear it’s head again no matter what for so many kids unable to participate. And that’s not even counting the people who will miss the entire week sign up altogether for whatever reason. The pleas of “can’t an exception be made” will be deafening.

The common factor in all “charity entitlement” cases is that people cannot see beyond their own situation. Returning parents cannot see past their son or daughter’s disappointment and their own warm and fuzzy feelings on that day the same way parents of kids never chosen cannot get past their kid being “rejected” once again by what they see as an organization they see as there to serve them.

Charity is not the same as services provided by the private sector or the government and this is where a lot of people get thrown way off course. In the private sector, you are paying for a service. So, for example, if a company is offering to take your child horseback riding, you pay a certain amount for the lessons, you sign contracts, you expect service and you rail if services are not provided. With government services, you apply, you go through an approval process and if you are denied, you can request reviews and hearings to plead your case. Parents, in particular, of children with special needs are used to fighting with insurance and government to get their children services they are entitled to like therapies and education. Parents often bring that same fight to charities hoping for a similar result. This is not the right approach. Charities exist because of the kindness of others and their donations which determine where and how much they can contribute. Special needs parents often don’t see an organizations limitations or fully comprehend them because they view them in the same way as a for-profit company or governmental department. Moreover most of these special needs parents are not engaged in any form of fundraising or publicity that would help grow the charity they are asking for something from. Some legitimately do not have the time because of their child’s disability. Then there are those who simply feel they shouldn’t have to do it because. We need to stop viewing charitable organizations in this way if they are to continue being successful for our kids. When a homeless shelter is out of beds, they turn people away. When a food pantry’s shelves are empty, they stop giving out food. Why is it different for a Surfers Healing? When camp is full, no more names can be added (each camp is required to have permits from the local municipality that state an exact number of children who will be taken out into the water which is 99% why the limits). Most grant organizations require a detailed accounting of how monies will be used in a project. Why can’t Make-a-Wish put reasonable limitations on wishes?

I live the life of having a child of special needs. I know well the rewards and the heartbreaks. But I also know when I’m being a reasonable mama-bear with a therapist or teacher whose job it is to provide my child with a needed service and how not to be an asshole to an unpaid volunteer at a non-profit is doing their best to be fair in providing a non-essential extra for my kid.