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Speak Up For Your Dignity

By David Chapple

People with disabilities are often taken advantage of by members of society because they think we can’t speak up for ourselves.  This is especially true when the individual uses a communication device.  These ignorant people probably figure since we can’t talk they can get away with anything they want and nobody would be the wiser.  Unfortunately many times Personal Care Attendants (PCA’s) are in the perfect position to take advantage of their clients.  Frequently we, the clients, are reluctant to report the PCA because we are embarrassed that we were the victim of another person’s ignorance or we are afraid of retaliation or losing the care we need.  However, we have to remember we have a voice, using AAC or however you can communicate, to stick up for ourselves.  Having said that, I would like to share two stories of when I was in this situation; however, I spoke up for my dignity and the ignorance was stopped. 

The first story is about moving into my first house. I was becoming desperate because moving day was a few weeks away and I didn’t have a PCA, so I put an ad in the local newspaper.  Although there were some promising prospects, things didn't work out and I was becoming even more desperate.  At the last minute, I had an applicant.  Being anxious, I unfortunately hired him on the spot without checking into his background.  He seemed very enthusiastic and ready to do anything but I found out I needed to be more careful when hiring attendants and setting the ground rules before they start.

A couple of weeks after I moved I went away to camp for a week and the newly hired PCA was still in my house because he didn’t have anywhere else to go.  Well, when I came home he informed me that he was arrested and he needed to take some money from my bank account for bail.  First of all, I don't know how he withdrew the money because he wasn't authorized by the bank to make any transactions with my account.  Secondly, he took the money in small increments over the week, which made it apparent to everyone that the police story was bogus and that he knew what he was doing.  It should go without saying I fired him on the spot and filed a police report. 

After the dust settled the police called and told me and my family that this man had a record for petty theft.  To make this long story short, the bank decided to prosecute him and as a result they gave me all but $50 of the money that he took and I couldn't be involved in their case.  I couldn't be involved because they considered this incident an error by the bank and I wasn't at fault.  However, I did have to go to the main office of the bank to identify a picture of him that the bank machine had taken.  At this point in time, I don't know what happened to him and frankly I don't care.  If I hadn’t spoken up who knows how much more money he would have taken from me, but unfortunately I can’t stop him from doing this to another client. 

No crime was committed against me in the next story, but my health and wellbeing were compromised because of another PCA’s laziness and neglectfulness.  Last summer my regular morning PCA needed to go on medical leave and I required a temporary replacement.  I already knew he wasn’t going to be like my regular PCA, but it was just temporary so I dealt with it.  Things were going very smoothly for about the first three weeks until one morning he wasn’t helping me with the shower because we were out of gloves.  I should say it was his responsibility to make sure he had gloves, not mine.  At this point I didn’t get upset and the next day he brought a pair of gloves (not a whole box) and I got a shower the next morning.  However, he just kept bringing a pair or two of gloves every morning for about a week and I finally said he needed to get a whole box because what if I got sick or had an accident.  What, do I need to wait for my other PCA or my roommate to come to get cleaned up because you don’t have more gloves?  He just said not to worry he will get gloves when he drops off his timesheet.  On my next shower day he informs me he didn’t have gloves again and he wouldn’t be giving me a shower.  This time I was quite angry and when he got me into my wheelchair and my communication device in front of me I told him to leave.  Right after that I called his agency and I haven’t seen him ever since.

Fortunately my regular PCA came back from her leave a little early and the next day she came prepared for her day with gloves!  In the couple of weeks that followed I found out the temporary PCA was fired because the agency did some investigating and discovered he did exactly the same thing to other clients.  The agency didn’t know about it because the other clients were too afraid to say anything.  That made me think what if I didn’t report him.  How many more clients would be neglected?  I am proud to say that PCA messed with the wrong person and I am happy to have prevented other clients from going through what I did. 

Hopefully after reading this you will see how important it is to speak up when somebody is doing something wrong to you.  My hope in writing this column is to inspire people, especially people who use AAC, not to be taken advantage of just because we can’t communicate like “normal” members of society.  If you would like to share a story when you spoke up for yourself please e-mail me at consumernet@aacinstitute.org, and I will guarantee it will be a topic of a future column. 

 

Here are some tips that we all should remember as we go about our daily routines from The Health Advocacy Toolbox: http://www.cthealthpolicy.org/toolbox/advocacy/tips.htm.

 

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