By Guest Blogger Noe Torres
A few years ago my sister started a non-profit organization called BACKBONES, the mission of which is to provide peer to peer support to persons with spinal cord injuries and their families. She has been asking me to write a blog post for Backbones from a brother’s perspective for some time. However, I found it hard to do so without getting angry and/or making it political. I have seen her move back to Illinois and have to wait several months to begin getting her disability and medical benefits that allow her to live at home and not in an institution, and I see a friend of hers have to wait months for a wheelchair repair, and I see politicians saying that we have to reform social welfare programs designed to keep the elderly and the disabled from being bankrupted by escalating healthcare costs.
It is frustrating to see that legislators like Mark Kirk changed their views on Medicare simply because he was directly affected after suffering a stroke. Although he was able to recover because he had adequate healthcare he realized that the 11 sessions of rehab provided by Medicaid would have never been enough for him to recover the way he did. However this also makes me hopeful that something can be done.
I am reminded of the movie “Milk” about the first gay elected official of San Francisco. There is a very important scene in which Harvey Milk implores all of his supporters to come out of the closet. Why? Because it is a recruiting tool and it would create numbers to make change. While working a booth at the Chicago Abilities Expo 2013, my sister Reveca recommended to our older sister that she bring the kids to the expo, for a split second she had a look of revolt on her face, then recovered, and said, “Yeah, maybe we’ll go.” That tiny moment suggested to me that she did not want her children to see that many people with disabilities, maybe there is a certain ugliness to it or maybe she thought they weren’t ready, but exposure is exactly what is necessary. This method of exposure has worked! The mass support and people taking action has made strides in marriage equality along with other civil rights.
During a conversation about why persons with spinal cord injuries, with muscular dystrophy, ALS, spina bifida, cerebral palsy etc. aren’t more vocal about their needs and inequalities, Reveca became frustrated and said “people don’t want to be a burden, they don’t want to impose so they don’t speak up.” People with disabilities are underemployed, have less access to transportation, sometimes have to enter buildings from the service entrance or use the service elevator because that is the only way to enter the building. It is a modern day separate but equal.
When I talk to able bodied persons the majority think social welfare programs like Medicaid and Medicare are full of waste and fraud; that they should be cut. In fact, the estimated amount of fraud is less than 5%, and reforms aimed at reducing that fraud, do not hurt the 5% fraudsters but rather the 95% that rely on the programs. Those who aren’t familiar with the healthcare and financial issues of persons living with a disability won’t understand that they rely on social welfare because often they are ineligible for private health insurance. E arning a living and subsequently losing Medicaid benefits is not a viable option.
Reading the comment section of an article about redesigning the “handicapped” logo, I came across this way of thinking:
I know, people all over the world are dying of hunger, the disabled people don’t even get any opportunities…
And these people, who were unlucky to be disabled, but lucky enough to be in a country that gives them ramps, elevators, special parking spots and preferential treatment in all sorts of places to make them feel included and give them equal rights are worried about some stupid logo.
Read all the comments here
This underscores the fact that many think persons with disabilities are getting preferential treatment or are welfare queens as if they have no reason to complain because they are being “allowed” to exist in society. To me this sounds a lot like immigrants who are not yet citizens, being told they cannot receive federal benefits, to which they pay into, but they should be happy just to be in the United States.
So I told Reveca, “You have to come out! You have to come out and make everyone you know with a disability come out! Make these issues known to all of your friends and family.”
So come out because if you don’t make your plight known it will be ignored.
“The test of our progress is not whether we add more to the abundance of those who have much it is whether we provide enough for those who have little.” – Franklin D. Roosevelt