Life is composed of small moments which, when united, build the chain of choices that write our destiny. Sometimes that chain breaks for no reason, and sometimes the pieces just don’t fit. In those difficult moments is when we are handed the opportunity to make a choice: to demonstrate ability, strength and creativity to find alternative ways to reach happiness, or the opposite, to give up and give someone or something else control over our lives.
To me, this interpretation of life mirrors the ideal of giving our children with special needs an inclusive life. Inclusion is a chain built by our personal choices that affect our children, and by our personal expectations as parents. Everything starts with the vision and the perception we have of our own children. However, this chain requires community involvement as well since it can’t be built in isolation.
To reach the goal of giving our children with special needs an inclusive life is not an easy task. No doubt this is an inspiring and powerful commitment when as parents we learn to focus on small triumphs along the way. Sadly, these moments that are significant and priceless for us seem insignificant to others and are not used as motivators, but as excuses to limit our children and our choices.
As parents of children with disabilities, we often learn to live in a constant state of ecstasy. We are full of hope and dreams for the future and find joy in the tiniest of milestones. Those dreams however can be rapidly destroyed or diminished when we are abruptly awakened and pushed to face a different prognosis based on psychological or genetic testing or a limitation imposed upon us by our environment.
In those moments I repeat to myself: “Disability is not the enemy. My enemy is prejudice and unconscious ignorance.”
Unlike disability, the prejudice often has no face. Therefore, it can be hidden, repressed, or masked. Many people serving our children have strong prejudices. Many of them love the “angelic” behavior but don’t know how to deal with “human” behavior from our kids. Many have no clue about how to communicate without the use of typical words, and instead of doing their job of integrating our children, they isolate and take away their rights, their opportunities and their futures.
No one in this world, regardless of his or her professional title, should be allowed to set limits on anyone else’s accomplishments. IQ testing should not be an excuse but a tool to write successful individualized plans. Awareness should be the most important professional qualification in order to educate others.
It’s true, not all of the failures can be blamed on others. As parents we have responsibilities as well. It’s not easy to not get tired, it’s not easy to try to understand why opportunities are not equal, it’s not easy to feel lost, and it’s not easy to invest so much passion and so much love, just to get hit again by a wall of prejudice.
Because of that, and as I’m trying to keep myself positive and motivated, I wrote these couple of new year’s resolutions for myself. You may find them helpful as well.
- To reflect about our own prejudices in order to solve our internal wars. It’s not until we overcome our own limits that we are able to set an example for everyone else.
- To accept our humanity, by giving ourselves the right and permission to make mistakes with the serious commitment to learn from them.
- To look for a more balanced life, where life is more like an adventure than a war in a trench.
- To practice a new perspective of ability, so we can bury the personal insecurities that keep pushing us to believe that there is “a way” to do things right.
- To believe in our truth with such love, passion and strength, to the extent of becoming contagious. We don’t need fancy wording, we don’t need excuses, we don’t need to make differences. We need instead to set real examples of faith and strength in ourselves and in one another.
- We have to renounce the wild cards of self-pity that limit our children’s success. We have to believe in our kids, give them opportunities, and stop using services or accommodations that are not needed.
Again, this is not easy, but it’s a commitment we need to make in order to evolve. It’s a constant fight within ourselves and with our fears as parents. It’s tough work which seeks to make radical changes in the way disability is perceived. It’s about teaching the power of different abilities towards a destandardization of the word “ability”. And we can do this, together.