"Perfect" Attendance Programs Stigmatize Kids with Chronic Illnesses - Systemic Autoinflammatory Disease (SAID) Support

Many schools in many communities in the U.S. and around the world reward students who have perfect attendance. They may win a simple certificate during an assembly or much bigger prizes, such as a computer, bikes, trips to Disneyland, iPads, or yes, even a brand new car.

This may seem like a valuable reward for students, but perfect attendance awards have a dark side. Before you shower awards on kids that happened to show up to school every day, consider the entire school population, especially the students with chronic illness and medical challenges. These school attendance incentive programs are discriminating against, and alienating children with health issues and disabilities.

True Story: One Patient’s Demoralizing Experience with a Perfect Attendance School Assembly

We recently received the following message from one 14-year-old student in the U.K who wanted to share her story. The school is aware of her chronic illness. She tells of how she felt about a recent assembly that focused only attendance. This young lady has a challenging periodic fever syndrome and often cannot attend school during attacks of her disease.

Sitting through this assembly, I felt I was being singled out because I have a rare disease. On Thursdays, we usually have an assembly, just because that’s the rota. Sometimes it was the Vicar, or another time it was a talk through of upcoming events, but this time, it was an assembly on the ‘importance’ of school attendance.

I had been sitting there for around five minutes, ignoring the snickers my friends were giving me. I was well aware that everyone in my year knew I was off a lot, and some of my closer friends knew why. I’m not usually one to bother hiding things – I think it’s pointless. Although, the only people who really understood my condition were the two people sitting next to me, that were taking great delight in my irritation. They muttered about the man who was explaining that if we do not come to school every day, we will fall into a pit of destruction and get disappointing grades. In addition, he tells us, if we are successful in being healthy for the whole year, you will get a certificate.

I thought, “Congratulations kids! You don’t have something that legitimately hinders your ability to attend school!” Did I mention the chance of having this autoinflammatory disease is pretty much one in a million?

While watching him hand out some shiny, paper certificates to the people who have 100% attendance, I started to get angry. I have suffered with periodic fevers from when I was small, and now, in year ten of secondary school (9th grade or the freshmen year for Americans), I was still suffering from it. Despite being on colchicine, which has helped, I was still having flares of my disease. I had been absent from school due to my illness just four days before this assembly. So in some ways, it’s kind of ironic that he decided to hold a school assembly on attendance right when I got back! I was angry because it was not my choice to have this one-in-a-million disease that keeps me out sick for days at a time. I am not choosing to skip school because I’m lazy! But that is exactly what this assembly is insinuating.

After the people who had managed to be in school all year had gotten their reward, we were all dismissed and sent to our lessons.

Walking out, I told my two best friends that I was not pleased at all. I really wanted to give him a piece of my mind.

A day or so later, I was given a purple card that stated I was to visit the deputy headmaster for an interview on my attendance. Of course, they knew very well why I was off so often, as it had already been explained. 10:25 a.m. was the appointment, and I was told not to miss it.

Of course, I’m a teenager and I forgot. I’m still human, after all. A lady came to pick me up. We walked pretty much in silence to the office, where I entered and told the deputy head that I had been so engrossed in my history lesson I’d forgotten to come down. He didn’t find this particularly amusing.

So as I was staring at him, and listening to him explain to me that my attendance was pretty low, and that yes, he knew why, I was resisting the urge to roll my eyes at him. He went through how he had been aware of my condition, and how my Head of House had made the other teachers aware, so I couldn’t help wondering why the heck I was even there, if he knew why. Although, I was still waiting for my chance to speak.

Then he asked me, “Did I feel supported by the school?” Bingo!

“Well, kind of. Apart from that assembly. Personally, I found that rather patronizing. You didn’t make any reference to the fact that there may be people, like myself, who have a legitimate reason to be off school so often.”

He then told me that yes, there is that issue, but he was trying to get the message across that attendance is good. He also said that he didn’t want to single me out in front of everyone.

For some reason, this makes me furious. Could it be that by highlighting everyone that had good attendance, and publicly putting down those who didn’t, that he [the principal] pretty much did single me out? Hmm. (I’m finding it hard to work that out. Give me a minute.)

“Yes, but the fact is you made no reference to me or other people who have a rare genetic disease! Obviously, I wouldn’t want you to single me out specifically. But by doing what you did, you could have damaged the emotions and stability of someone like me, that may not be ready to tell the school about their condition.”

I have to keep repeating myself to him until he finally understands what I’m trying to tell him – that actually, I can’t help missing school. And some others might not be able to either. In no way am I endorsing people who skive off, but that leads me to another question; does he know why people aren’t at school? Could they be being bullied? Are they finding their work too difficult or easy? Or have they just given up?

That assembly, in my view, was in no way going to combat low attendance. To annoy him, I thought, “Well I’m going to decide to get ill this week.” Because that’s what I felt like he was implying–that I have some control over my illness, and I am choosing not to come in, not because I physically cannot attend when my disease is flaring.

In his defense, he did apologize and said that in hindsight, he should have included that topic in the assembly. But all I can think about was that saying sorry now is not going to change his words, or comfort who he might have hurt in that room that day.

So the same night, I went home and told my mother. Which has ended up with me writing this story.

That administrator angered me by his lack of thought, and I told him so. That’s all I did. And if you, or your children suffering with a rare disease are reading this, I suggest you do what I did. Actually, print this out and show them, and tell them that a 14-year-old girl wrote this, who has gone through it and still going through it. (Woohoo for me!) Ask the school to think their facts out and try and learn why we’re not at school.

What’s the real message we are pushing on kids with health challenges, and their peers?

While attendance reward programs are designed to motivate kids to go to school and do their best, kids living with a serious medical condition are hearing a different message. They hear that they are not good enough because they have a disease, that in many cases is due to genetic causes. Many may feel that they are being punished by the school for having their disease. With these messages from their administrators, healthy peers may think that they are better than, and have more opportunities than a classmate who has medical challenges.

There is already a lot of social stigma for children with chronic diseases to deal with on a daily basis, and missing school means that they have to spend more time catching up on school work, taking tests after school and less time to be social and interact with their peers. And often, their friendships are affected if they are not around as much as the other children. We do not need more things that divide and isolate people with chronic illnesses! These children often do all the work, and do not want to be given exceptions, but do need to miss school at times when they are severely debilitated by their disease. They need to miss school to take care of themselves.

Note that a flare of autoinflammatory disease causes fevers, severe pain in the joints, abdomen, head and elsewhere, and many are vomiting, or having loose bowels and can barely keep fluids down when they are at their worst. They are not contagious, but suffer from their disease flares greatly. For people that do not have these diseases, most would be rushing to the doctor and unable to manage the symptoms that these patients suffer often from their disease. So, when a patient with an autoinflammatory disease has to miss school (or work), they are in a state that would send most healthy people to the hospital. Yet people expect these patients to just suffer through it, and carry on, and often do not believe these children are suffering as badly as they are, due to their high tolerance for pain, and resilient attitude.

Why have perfect attendance awards?

Many school attendance reward programs only have the one criteria–that the child attends classes every day. (Which also means some may come to school ill, and infect others, but that is another topic of discussion.) Often to earn an award, it does not matter how hard they work in class, how involved they are in school, or what their grades are – it only matters that they show up.

It doesn’t matter if a student is keeping up with schoolwork at home, while in the hospital, or waiting in the doctor’s office; but still manage to make good grades–maybe even straight A’s. (top marks in the U.S.) These things do not earn someone a perfect school attendance award. Again, the message they hear is that because they are physically unable to sit in the classroom every day, they are not worthy of such a reward. Only their healthy peers who have the ability to show up and sit in class each and every day can have a chance at winning that free car, or tickets to Disneyland.

Schools value attendance as a way to increase their graduation rate, but this is not the only reason for these programs. There’s another reason the only criteria may be that a child attends class. Often, the school district funds allotment is based on the number of students attending school each day. So, the more students in class each day, the more money the school gets. When kids are home sick and not in class, the school loses money. Sometimes, students and their parents get the impression from the school, and even their teachers that their child is just a big burden on the system because being sick looses the school money, but every student has the right to get an education, with accommodations for their medical needs.

Does school attendance really affect success?

It’s true that studies show school attendance does correlate with better odds at achieving high school graduation, which is only one standard of academic success. Success in school does depend a lot on access to learning and teachers, and it is easy to equate perfect attendance with the best odds at a child graduating.

Kids who can’t attend school regularly often have a significant life challenge preventing them from attending school, such as a severe medical condition. That life challenge is likely to be a major factor as to how well a child does in school. The level of support from the school would be another key factor. Many would rather be at school, and are not looking for reasons to “cut class” or be truant but due to circumstances beyond their control cannot be at school.

Despite it all, these children have a level of internal motivation and desire to succeed in their learning that many of their peers have not mastered. They have developed skills that many people dream of seeing in their (healthy) children!

Where is the reward for these educational skills that are as associated with success as attendance? Many of these children grow up and push themselves to finish college and also work, despite daily challenges and health issues.

Threatening kids and families dealing with serious health issues with truancy actions, and excluding sick kids from winning a valuable reward (like a car, tickets to events, etc), but rewarding healthy kids just for showing up, regardless of actual performance with their studies does not help chronically ill children succeed in school. It does not set a child up for success, nor does it create a sense of community where the school teams up with the child and their family. Instead, it creates one more battle the child and their family must fight. A battle to just to be accepted in school. And in many cases, these children and their families have had to struggle to get their child’s educational needs met. Perfect school attendance awards only remind them that their struggles and differences are not in sync with their peers, and other children are quick to notice, as noted in the teen’s story that we featured.

One child with an autoinflammatory disease said recently,

“Nothing would make me happier than to be able to go to school every day, to see my friends, be in clubs and sports, and not be known for being the kid with the medical condition that misses a lot of school.”

This child and others like him happen to have challenging medical issues from systemic inflammation and in some cases, permanent damage from their disease. Despite these challenges, many excel in their studies, and graduate from school with good grades, all with very imperfect attendance.

Did you know?

Most fever syndromes are lifelong conditions that involve recurring systemic inflammatory symptoms such as rash, fever, and joint swelling.

More School Help

School 504 Plans for Kids with Periodic Fever Syndrome

U.K. Department for Education: Supporting pupils at school with medical conditions

U.K. Medical Conditions at School Website

Educational Resources to Help Family, Friends, and Teachers Understand Autoinflammatory Diseases

References and Resources