Of course not, however it appears that some seeking elected office and major corporations think that it is!
Recently in the news, Donald Trump mocked a reporter with a visible disability. Sadly, this is just one more time that those with disabilities are the punch line of someone’s joke. These reprehensible comments have immense power to hurt those with disabilities in ways that may be more subtle then some may think. Sadly there are still people and corporations who think those with disabilities are deserving of being mocked and therefore “kept” in their place.
There are millions in the US with physical challenges / disabilities, many who succeed in the face of living with these disabilities. Society hold these people up, as those who have endured and are in some cases are somehow heroic. The reality is many face life with seen and unseen disabilities every day and thrive, they are not necessarily “heroes”, they are humans living in the bodies life has given them and making the best of it.
I represent a community of those with a genetic heart muscle disease, hypertrophic cardiomyopathy or HCM. While some with HCM have no limitations and therefore would not be seen as “disabled” others have from mild to severe limitations in their physical abilities and are “disabled” by definition. I was diagnosed at 12 with HCM, I did not consider myself disabled per se, however I had limitations and experienced “being treated differently” by the age of 14. These early negative interactions with “authority” figures in my life changed how I viewed the world and built an insecurity within me that took years to overcome. In previous blog posts, I have discussed “Living the Lie”, this post however is not about hiding a disability in order to make those around us more comfortable, it is about the way the “world” can influence how we view ourselves.
Having an unseen disability is confusing to the outside world – we “look” fine however, you cannot see the challenges that hide within. In my case, I cannot walk as fast as others can, I cannot physically do as much as others, I cannot breathe well in extreme conditions (heat, cold, humidity, altitudes), I cannot participate in some physical activities. You see I live life on a balance beam of sorts – balancing salt and fluid intake – balancing activity and rest – and knowing if I tip too much in one direction I will be in severe heart failure. In addition, due to a stroke in 1990, I am partially blind in one eye – all the while at risk for sudden cardiac arrest. I view my limitations as mild when compared to the challenges others face. No, I may not be seen as “normal” to some and I may not be seen as “disabled” to others, I am limited in two major life functions, which creates challenges some others do not have but makes me more fit and functional then others. I am not a victim of my limitations… I am the queen of disguising them and thriving in spite of them.
So why it is that Donald Trump’s recent attack on a reporter with a disability enraged me so much? Because people like me have had to endure employers, government agencies, schools, airlines, and even family and friends degrade and disparage and in some cases marginalize us in part because “leaders” show them it’s not only alright to do, but it is funny and gets them attention. Leaders should not encourage the disparity of those with disabilities as Trump did. Even if he continues to deny his actions as a jab at the disabled, millions see through his attempt to deflect and know it was a hurtful and disrespectful attack.
Living with an unseen disability, we know that employers may deny us opportunity, not because we cannot do the job, but because they may see the potential of needing to make an “accommodation” as afforded us by law under ADA. Government agency’s make those with some unseen disabilities jump through so many hoops to access services and support that many simply give up. Schools have created hostile and unwelcoming environments to children and staff living with unseen disabilities by such things as failure to provide lifesaving AED’s, lack of training to staff to address children with cardiac issues and failure to drill for cardiac emergencies. Airlines have bullied countless cardiac patients in violation of the law demanding certification to fly when it is completely not necessary. Even our family and friends don’t always understand when we can’t participate in some activities, need more rest or simply need a little time to prepare for events or activities, which can make it easier to say “no, I will stay behind”.
When a public figure takes a jab at a disabled person, this validates all the bad behaviors we experience and live with every day – it simply must STOP. The Americans with Disability Act is a fantastic tool to help us gain equality, however when politicians and corporations think they are bigger than the law or view penalties as the cost of doing business, its time to make the penalties more severe.
While a child in high school, I was bullied by the football coach/gym teacher while having an episode of chest pain due to my HCM. As much as I do not want to give him the “power” to have influenced my life significantly, he did. He was an authority figure, who was supported by his superior, the Principal, in his actions. There was no apology to me for calling me out in class for my inability to do push-ups while having chest pain – even though I had a doctor’s note explaining my condition. I was disciplined for being “difficult” and calling too much attention to the incident by having my parent come to school and meet with the Principal and teacher. This was 1982, had it been today, had it been my daughter this would have been dealt with very differently, but it is not. Experiences like this shape our views of the world and how those in power can influence us. Those in power do have power to influence how we view our abilities and disabilities.
We need to, as a society, work to embrace those with unseen disabilities to encourage them to participate at the highest levels possible. Unfortunately, it also means our government must provide protections and make them accessible and visible to those in need. Why do I say unfortunate? Because poor behavior by employers and businesses are still commonplace. For example, a client of the Hypertrophic Cardiomyopathy Association, HCMA was thrown off an American Airlines flight in Chicago in violation of the law and leaving the client unsure of her rights. Last week I spent two full days searching out how to respond to her being unlawfully thrown off an airplane on her way home from heart surgery. I found that there is a division of the government to assist disabled travelers, which is fantastic. (link:http://airconsumer.ost.dot.gov/publications/horizons.htm) However, this division should not be so hard to find or should it be as needed as it is. However, the reason for needing this division is more troubling then the need for the division … airline attendants are now on the front line of being taught, by their employers, to bully cardiac patients and make medical opinions based upon this training and guidance. In this case, the appearance of a bandage on the chest of a 40 year old woman was enough for them to determine that she can’t fly (despite medical approval and release from the Mayo Clinic – really who knows best – American Airlines or Mayo Clinic – my vote is Mayo).
We have rights as those with unseen disabilities, but again, when candidates for the highest office in the nation disparages a good man with a visible disability, why would we want to make ourselves visible to endure that type of treatment. Well – I stand with Serge Kovaleski – and all those with visible disabilities and invisible ones and will not sit back quietly and be bullied one day more.
Until next time –
Lisa Salberg – your bighearted blogger