“Stay Calm and Keep Fighting” Disability peer advice during COVID19- By Anomie Fatale

Taking maximum precautions against catching a globalized pandemic when you are among the at-risk population is not over-reacting or panicking. As members of this vulnerable group, stocking up at home sufficiently with necessary supplies and staying quarantined from outside potential exposures is a life sustaining activity. Unfortunately for us with home health care, being quarantined also can mean living without the services we depend on for daily life.

 

For those at-risk people who do not have someone to stay in their homes to provide them with acts of daily living, there really is no care option that is 100% safe from exposure to health risks. If a nurse or attendant becomes infected, their patient will likely be infected too. It is no coincidence that the first group of fatalities from COVID-19 in the United States was in a nursing home. Because of the close human contact required by their jobs, nurses and home health aides should be counted as members of the at risk population as well, especially those that work with multiple patients.

 

I have two attendants. One is a female through a company who provides my personal care needs (showering, dressing, hygiene, laundry, etc). The other is my roommate/male friend who took on the job of helping support my community-based services (driving, errands, doctors’ appointments, etc.). My female attendant takes two public buses to get to me each day. Because of the exposure risk factor of public transportation, I made the hard decision to call off services from her. It’s extremely awkward and uncomfortable for me to have a male helping with personal issues, but thankfully my roommate is respectful and we’ve found ways (through covering with a towel/robe) that we can get through this during quarantine. I have many friends with disabilities that live alone that do not have the option of being awkward and safe.

 

Despite my efforts to avoid getting the virus, I already had one coming on. About two weeks ago my doctors made the mistake of discontinuing the benzodiazepine medications I’ve been taking to sleep without a tapering dose. My body went into withdrawal shock, and since that can actually kill from seizures my attendant called 911 and an ambulance took me to the nearest emergency room. They sat me in a wheelchair I could not get out of right next to a man that was violently coughing and shouting “I’m drowning” between coughs.

 

A few days later I developed a sore throat and cold like symptoms, then a few days ago, it turned into a full virus. The fever came, with significant shortness of breath and chest tightness. I called my primary care providers; they did not want me to get tested for COVID because I did not have a cough.

 

The main problem with testing for at-risk people with disabilities is that the testing itself isn’t accessible. Friends told me I could go to a drive through test site. However, if I can’t sit up or move around with symptoms, how am I going to be ok to get in a car to go anywhere that’s not an emergency room? Going to an emergency room (unless I’m not actually dying) is a bad idea because it further exposes people to whatever I have (like how I was initially exposed).

 

So, here’s my advice to anyone with a disability whose sick right now (after you have called your doctor and gotten the ok to handle it at home):

 

1. Stay hydrated/eat nutrient dense foods if you can. Take vitamins if you can. I know there’s plenty of conditions that limit this and those people should ask their doctors or nurses what to do.

 

2. Relax, limit physical exertion, let your body fight and heal. Do not think about the C19 word. Listen to uplifting music. Avoid negative social media (but stay informed with news updates).

 

3. Check your temperature, heart-rate, blood pressure, and pulse oxygen levels regularly. If those get out of whack (especially the pulse oxygen) call 911 and mention the possibility of C19 so they can prepare/figure out a plan to get you to the hospital where you need to be.

 

For people with disabilities that are not sick: Stay home and stay safe till this blows over. It will get better. Don’t listen to the doomsday people, positive energy and hopeful thinking are our primary defenses and survival.

 

For people without disabilities, stay home if you can. If you have to go in to work, practice hand washing and social distancing. Stay home if you are sick.

 

Many disabled people on a normal day cannot leave the house. Many jobs that have never considered the work at home option for their employees are now being forced to give it. Hopefully the silver lining of this global tragedy is a wake-up call to businesses that those of us who cannot leave the house for medical reasons are still potential employees with valuable lives.

 

The COVID-19 Pandemic has turned the world upside down, and for the first time people on SSI and SSDI are the lucky ones. This is karma for every landlord that turned people away who rely on benefits, because right now we’re of the few with stable income. This is karma for every ableist friendship who ghosted because their friend became too sick to leave the house, and since they couldn’t go out to the bar on Friday they weren’t “fun anymore”. Those of us that are used to being stuck in the house all the time are mentally prepared for lockdown.  The weak have become the strong, and we should use this strength to help others who are struggling with the anxiety of containment and losing the fragile structure of normal society we’ve been separated from for so long we’re solid without it.


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