Empathy is the ability to sense, understand and appreciate the feelings and experiences of others. It requires taking the time and making the effort to focus on someone else without judging them and without giving into the temptation to deny the validity of their perspective. Unfortunately, it is often the case in the lives of people with developmental disabilities that empathy is not embraced by those who have a direct effect on their lives.
It seems that everyone is allowed to live their life in their own way except for people with intellectual challenges. How frustrating it must be to have others, even those with the best of intentions, make important decisions for you without really knowing your personal wants or desires. It must be disheartening when others assume that they know better than you what your personal preferences might be regarding important aspects of your life.
The following are some typical situations where we fail to see the world from the point of view of men and women with developmental disabilities.
* How does it make a person with an intellectual challenge feel when someone in authority repeats instructions over and over again in an increasingly loud tone in the mistaken belief that saying their directions harshly will make them understandable? While they may believe that speaking to someone with a disability in that way makes things clearer, what it actually does is increase the stress level and anxiety of that person. Instead of making the situation better they are demonstrating their frustration with an individual who is doing their best to comprehend what is being said.
* What must it be like to have physical challenges while trying to function in a world where people are obsessed with moving at such a fast clip that they are unwilling to allow you to move at your own pace? No one wants to be considered an inconvenience or a burden, and yet those are the signals that are too often sent out to an individual who is not always able to keep up with those who are in such a hurry.
* If a person is nonverbal, how infuriating it must be to have people assume that they do not have thoughts, ideas or opinions that are worth sharing. The point of view of an individual who does not speak is just as legitimate as someone who is fluent. Just because they do not express it verbally does not make it any less valid. Every person has the right to be understood, and there is no exception to that right based on how a person communicates.
* How many meetings are people with developmental disabilities forced to sit through as important decisions are made concerning their lives by individuals who barely know them. The revolving door of case managers, habilitation training specialists, speech therapists, physical therapists, behavioral psychologists and assorted health care providers often discuss the future among themselves without soliciting the person’s opinions. Instead the individual with the disability is steered towards goals that may or may not be appropriate for them. In today’s current political climate, they are even being manipulated into the type of employment the government prefers for them rather than what they might actually want.
* Because people with intellectual challenges are frequently not able to meet their own transportation needs, they are often required to live on the schedules of other people. Instead of doing something when they want to, they do it when it is convenient for the person who is driving them. Individuals with developmental disabilities are expected to make such compromises because people want them to be “easy to deal with” and not someone who is considered “difficult” or “demanding”.
* Try to imagine what it is like to have a speech disorder in a society that is based on rapid communication. When people do not have the patience to listen attentively, and instead attempt to finish someone’s sentences before they can say them, their disrespect leads to misunderstandings that can be detrimental to everyone involved.
* Just like anyone else, an individual with an intellectual challenge should be allowed to attempt new things. How can they be expected to make progress if they are not given the opportunity to try? Sometimes they will be successful, sometimes not. However it just might be the case that they are capable of far more than was believed. But, unfortunately, when they do occasionally fail at a new task, many people immediately label the person as a failure. Jumping to such a harmful conclusion can have a limiting effect on the individual’s opportunities going forward.
* People with developmental disabilities experience moments of anger and frustration just as we all do. However, they are often told that these are “behaviors” that need to be dealt with. Sometimes they are accused of being dramatic or too emotional, but it is not reasonable to expect a person to be totally compliant with every request or order they are given. They have their own perspective. They have opinions. Perhaps it is just not in their nature to be meekly subservient to every person who has a degree of leverage over their life.
* Too often their desire for independence is viewed as an attitude that must be controlled or restrained. Because a person with an intellectual challenge wants to follow their own wishes and dreams, they are sometimes viewed as a bother to those in charge who do not want to make the extra effort that can be the difference in an individual’s quality of life. Those in authority should not put their desire to make their job easier ahead of someone’s right to enjoy as much personal freedom as they safely can.
As you can see from these examples, people with developmental disabilities must sometimes feel like no one understands that it is their life, and it’s just as important as any other person’s. They want it to have meaning and to be fulfilling. They do not want to be thought of as different. They do not want to be pushed aside or excluded, and they certainly don’t want to be forgotten.
Individuals with challenges want to sing and to dance in their own way. They want to laugh and to express themselves freely. They want to feel joy and happiness. They want to know that they are appreciated and valued. They want to be respected and to live with dignity. And although some may have difficulty conveying these sentiments, they experience them. They feel them. Their emotions are real.
We must understand that having a diagnosis of a developmental disability does not make an individual less. They are, in every way, an equal member of society.
That is why it is so important for all of us to try and see the world through their eyes.