Invisible Disability: Let's talk about it, Shall we

International Disability Day 2018 has just passed some weeks ago, and we have a lot to talk about of this day, its significance and after all, about an invisible disability.

Dario is considered having a minor disability or handicap. Once in three years, we have to do some kind of assessments to determine whether or not Dario get social allowance and assistance, and this year we have done the recent one. It turned out Dario has a positive result, and the panel of doctors approved that he needs to get all the benefit from the government.

We, as parents, have mixed feelings about this. One side we are happy that financially we are helped by the government (Italy is one of the countries with the highest rate of tax in the world by the way) but on the other side we are upset because, in front of a bunch of strangers, Dario is really not capable of doing what he should be doing at this age. Perhaps, My husband and I are pretty delusional about his milestones, not that we didn't see him struggling but from our point of view his overall condition is way better than the previous one. Outsiders do not understand this, doctors as well. For them, Dario's diagnosis alone should put him on the list of people with a disability no matter how fast his progress is.

Eventually, disability isn't always about a wheelchair, mental retardation or physical defects but it's more about the limitations of one's movements, senses or activities.

Some people contacted me or commented on my social media saying that Dario looks fine, seems like nothing wrong with him. I explained that if you met us in a real life, you'd see the fact that he is different from the other kids. They said "maybe his limitations are not apparent to the onlookers" Yup.

Then, does Dario has a visible or invisible disability? I am not sure how to say but I can't deny he has a disability. He needs help, he is not at the normal pace of his own milestones, his heart and lungs are his biggest limitations and above all, he gets tired quite easily. Imagine when you wanted to do many things but your body just can't cooperate, you just feel hopeless. That's what happens with my precious one. Yes, he can walk but he barely runs (he has a flat-foot and 20° of curved backbone), yes he can eat by himself but I am still there to make sure he eats otherwise he gets skinnier (he eats mostly with food fortifier because he needs more calories, due to his heart condition). Not to mention his difficulty to understand things, he is a slow learner, not gonna lie about this, but he can be taught. Later we found out that he has a cognitive difficulty that belongs to 22q behavioral issues. So, if I have to decide whether my son has a visible disability or invisible disability, I just don't know, I let people decide.

Talking about disability in general, people associate this word with something rather physical, an ongoing physical challenge one might face for example being in the wheel-chair. People with disability are mostly judged by being 'disabled' which refers to being 'lesser' than anyone else which is not true because every person has their own purpose and value, has their own uniqueness that can't be compared to the others.

Furthermore, invisible disability is even harder to describe because the challenges might not be obvious to the naked eyes. People with invisible disability are mostly frowned upon because they look perfectly normal. Some even call them 'attention seekers' or 'liars'. The facts that they have an invisible disability is quite frustrating because who wants to have such limitations, right? There's no way a person could fake a disability.

Everyone with a disability is different. They have their own challenges and needs along with their abilities and attributes, and the only way we can know about that is by listening to their own stories instead of judging 'Oh, but he looks fine'!?