As we prepare to celebrate our nation’s independence and our freedom as Americans this 4th of July, you may question, ‘are we really free?’ Individuals with disabilities have additional reason to ponder this question.

Freedom and independence is something for which every living creature will fight to no end. We go to war to uphold our basic right of freedom; people die to uphold the American dream. I’ve heard that a mouse caught in a trap will chew off its leg to get free. Without freedom, life has little purpose. The quest for freedom is instinctual, no one wants to be confined or controlled. Without the freedom to make our own choices, the quality of one’s life suffers significantly.

The importance of freedom and the right to make choices is no exception for the disability community. When basic human rights are denied, individual must band together and advocate for change.

Over the past 232 years many men and women have gone to war to uphold American Independence. In the last 44 years, there have been several laws passed to afford and define our freedom, starting with the Civil Rights Act of 1964. In July of 1990 after years of advocacy, Americans with disabilities saw the enactment of the Americans with Disabilities Act (ADA). This law afforded individuals with disabilities protections against discrimination. In June of 1999, the US Supreme Court affirmed the right of individuals with disabilities to live in the community of their choosing, in the most integrated setting possible. This affirmation is known as the Olmstead decision. Today the fight for freedom continues despite the enactment of such laws and mandates from our government. It is unfortunate that anyone still has to fight for what is their basic human right.

Part of being free means the ability to make your own decisions and choices about how to lead your life and where to live it. It has always been my belief that we all have the right to remain living in our own home, rather then being placed in an institutionalized setting where strangers dictate every factor of your life, including when to wake, when to sleep, when to eat, etc.

No one questions the average individual’s choice to live alone, with family, within the community setting, so long as they do not have a physical or cognitive disability. For people with physical and or cognitive disabilities who need personal care that choice is not a given. If you have a disability from birth or acquire one later in life you will encounter a well meaning doctor or other health professional who feels they need to save you from yourself. They will suggest you “consider moving into a nursing facility were people can care for you 24 hours a day”.

This is exactly what happened to both of my parents, first my dad then my mom. As they aged, they got sick and needed personal care support. The well-meaning medical professionals assumed that the only solution for my parents was a nursing facility. This was not my parents’ idea of retirement and the struggle to get them home was difficult. My dad passed away, in the hospital, while waiting for Medicaid to be approved so that he could get home care assistance. My mom was luckier; she had medical insurance that paid for short term attendant care services, so that she could come home right away, despite the numerous nurses and doctors who tried to commit her to a nursing facility.

Even after coming home, my mom faced weekly questioning by the home care nurses regarding her decision to remain living at home. One physical therapist even placed a panicked call to the home care agency in front of my mom requesting an in-home assessment to see if my mom should be removed and placed in a facility. The nurse did come to do an assessment, and my mom was able to remain home because she had learned to be her own self advocate. She was armed with the knowledge that she has the right to live in the community.

I am thankful for all the knowledge I have gained about human rights, independence, and freedom, because when faced with the onset of disability, my mom needed an advocate to help her to maintain her independence. As I discovered from this experience; hospital doctors and social workers can be very forceful in achieving their mission of getting individuals with disabilities into nursing facilities. It can be extremely intimidating when you are lying on your sick bed with the hospital representative hovering over you telling you that if you do not sign to go to a nursing facility, you will have to pay enormous hospital fees, because your insurance will stop. Of course, they tell you in the all-knowing tone of medical professionals that “this is the best thing for you”. It is extremely intimidating.

My advice to my mom and to all readers is to stay firm and remember that you have rights. There are alternatives other than nursing facilities. After all, this is America, and freedom is what the United States was built on. The advocacy efforts never end and my mom and I feel we always need to be on guard to protect her right to the freedom to choose to live within her own home. As Independence Day approaches, my mom and I will celebrate independence and be grateful to all the disability rights advocates who fought for the rights of people with disabilities and continue to fight to maintain the Americans with Disabilities Act.

Human are “basic rights and freedoms to which all humans are entitled.” The Universal Declaration of Human Rights (UDHR) is a non-binding declaration adopted by the United Nations General Assembly. Article 13 reads “(1) everyone has the right to freedom of movement and residence within the borders of each state.” As you celebrate your independence and freedom, keep in mind that every individual, regardless of disability, is entitled to life, liberty and the pursuit of happiness.

Don’t be afraid to fight for your rights.