On August 28, 2018 I observed my 15th year as a disabled person, becoming disabled on August 28, 2003. I woke up that Thursday morning and my hip was really hurting and was weak. I thought at first that I had pulled a muscle or twisted myself when I was sleeping but my situation did not get any better. I find myself 15 years later still disabled, which will remain that way unless the Lord heals my legs or my transition to glory. Some things I have learned over these 15 years which may be of help to those who deal with disabled people or just have friends who are disabled. I want to offer some suggestions that will prevent anxiety in that relationship. Many times, people who do not suffer from any disabilities may accidentally do things which could cause more problems for the disabled person. I do hope that you consider these things because it helps alleviate stressful situations.
1) Don’t Just Show Up, Call Ahead!
Many times, people will just show up without any notice, which can cause problems with a disabled person. They may be in the middle of something where they might not be able to finish in a few seconds and this places much stress on an already taxed person. Call ahead, even if it is only ten minutes ahead, it allows the disabled person an opportunity to either accept the company at that time or postpone maybe for another hour or so. Believe me, it is very courteous to call ahead, as it takes a disabled person longer to get dressed or complete tasks than other people.
2) Set Proper Time Parameters
If there is one thing that drives me crazy it is when I have a repairman or mechanic come to the house to do some work, without setting a time parameter. There were times I had to go out to get food, and the person would call me and tell me they would be there in 5 or 10 minutes. That happened to me when I was 14 miles away. How could I drive back 14 miles to the house in 10 minutes? If you are going to visit a disabled person to do some work at their residence, give an accurate window of time so they can be prepared to receive you. There were even times I was given a certain time and the repairman was 2 hours late. I got light headed waiting for the person because I could not get out to eat.
3) Never Move Things Around in the House or Discard Anything Unless Asked
Another thing that has given me problems over the years is that people come into my house and move things around. For example, I use plastic bags to carry items from one room to another, therefore I stage them in various places where I will use them. Many times, I have gone to get a bag and it was gone. Either it was moved or thrown out. Disabled people place things in different places for reasons of convenience, not for someone to move or throw out. This is especially important for those folks who do house cleaning. Whenever you move an object, make sure you put it right back where you found it. I remember a few times that my lamps were turned off because the cleaners had tried to turn them on by the switch on the lamp itself but could not get them to work. I have all my lamps on remote switches so all one must do is use the remote. If the disabled person is never asked about the lamps and need light in the middle of the night and the lamp is turned off without warning, then that creates a major hardship. This could be exacerbated if the person needs to get to the bathroom at night, with no light and unable to find their slippers. This could lead to the proverbial “accident.”
4) Have Patience
There is another thing that drives me mad. It is when someone rings my doorbell and leaves in a few seconds. By the time I get out there, no one is there due to a lack of patience to wait. Disabled people have all kinds of disabilities that hinder their ability to move fast. People who have good bodies must realize that. If you do not have the patience to wait, then don’t ring the doorbell without calling ahead.
5) Look at Life from their Perspective
A disabled person has limited options in life. What once came easy to them, now possibly comes hard. Once I could get up and walk to anywhere I wanted, even distance walking. Now I am limited to only a certain distance, without experiencing leg pain or being out of breath. I must also use a cane. We are limited to what our body can do and not what it cannot do. We have had to switch our lives around and remove those things we used to do and replace them with limited things that we can do. What people with good bodies must understand is that disabled people did not ask to be that way. The will of God has made us this way to work out His plan. For my thoughts are not your thoughts, neither are your ways my ways, saith the LORD. Isaiah 55:8 (KJV) Do we always know why these things happen? No, we do not. God is not obligated to tell us, but we can be sure of one thing, our disability was not done out of dislike for His children. Do I miss being on the preaching circuit? You bet I do, especially at this time in history when there is so much heresy proclaimed in churches and among Christians in general.
6) Visit once in a while and bring a Pizza
Disabled people know that other folks cannot come and sit with them all day. That is not what is being asked. An occasional visit from friends, even for a few minutes, does a lot to brighten up the day. I estimate I spend about 99% of my time alone and occasionally, someone comes to visit, or I will have a conversation with a neighbor for a few seconds. These visits may not last long, but it tells a disabled person that they are not forgotten; that they still have value even when they are sequestered because of their physical problems. The alone time also helps me develop Bible studies and write articles, so it does not go to waste.
7) Disabled People Create Routines
A disabled person will create routines for themselves to make their existence a little easier. For example, they may shower every day at a specific time. They may eat at specific times. They may go to bed at specific times. Do not try to undercut their routines because they are a necessary thing in the life of a disabled person. If you think of a way they can do something more easily, make the suggestion. If it is not accepted, do not take offense. They must evaluate if your suggestion will help or make it harder. Remember, you are not the one who is disabled, they are, and with that disability come many life shifting routines and habits. Their routines may seem a little out of sorts, but it may be designed to ease their daily living.
8) Disabled People Normally Need More Rest
When your body is operating below standard, you must exert more strength just to do normal routines, even walking. A disabled person typically be more tired at the end of the day and may need more hours of rest because their body must work twice as hard as those with good bodies. So, if a disabled person states that they do not get up until 10 or 11 AM, then be courteous and do not ring their phone or knock on their door at 8 or 9 AM in the morning. If they have e-mail, send them an e-mail for them to see as soon as they are awake, asking them to call you when they can.
9) Disabled People Do Need Help
There is no denying it that disabled people do need help, but that does not mean they will guilt or manipulate you into staying all day or doing it for nothing. Many times, I need milk, need to have a package taken to the post office, be pushed in a wheelchair from point A to point B, have a heavy package from UPS brought into the house, etc. The Lord has raised up a friend I have known for over 30 years to help me in these many situations, who lives around the corner from me. He raised up the couple who discipled me as a new Christian, who also live close to me. They put up my curtains and a Roman Shade. Another brother helped me on the day of my move from Edison, NJ to here in Whiting, NJ. For those who help me, I try to compensate them for their time and use of vehicle. If you can help a disabled person, then meet with them and ask if they can consolidate their needs for doing things at one time. Sometimes it is hard to do, but you make every effort. A disabled person will not try to manipulate those who help them. I personally will not call anyone for help if it is something I can do myself, even if I must do it slower. I will never presume upon a friendship.
Final Thoughts
As a disabled person, I really appreciate those who help me when I need it. Disabled people are sometimes misunderstood because of the way they must live their lives. It has no reflection on friends or family, but they must readjust their lives because this is a new era which will probably last until the time the preacher stands over them and says, “He looks so natural.” Try to understand the situation that the disabled person is in and you will have greater appreciation of them. Always remember, the next disabled person could be you. He who has ears to hear!
Dr Matto, thank you for the considerations and respective explanations to help others understand the needs of disabled people. I have been disabled for about 10 years with CMT. It irks me when others have give no thought to my needs such as the extreme fatigue and slowness of mobility. I do not look for pity–only consideration and understanding.
Dr. Matto, it sounds like you have become crotchety and chosen to isolate yourself. I was the independent lady who grew up working on cars and becoming the “home improvement queen”. I became ill and disabled early 2008, and it’s been a long journey. Sudden debilitating onset of fibromyalgia, overwhelming fatigue (yep, close my eyes for 2 seconds on the couch and dinner is ready when I wake up) degenerative disc disease, spinal/pinched nerve/sciatic pain (like no gaskets between the vertebrae) heaped with 24 hour vertigo from “just” nausea to everything spinning around me. It’s true those things are not visible to people who don’t know you well, like the rough supervisor who bragged about surviving being knifed several times by her ex-husband; constantly commenting to me that I look just fine to her. Or family members with continued expectations (guilt and pressure) for me to travel three hours for “required visits”. Spend a day in my shoes, fighting the swirling vortex literally sucking you down into lapses of consciousness…… going through most days feeling like my bottom is hanging on to my back by a thread. It’s true we get tired easier (three hour shelf-life) and things are harder and slower to accomplish, but I have learned to plan things out in my head for days, weeks, even months, make notes, and on the day I wake up and have the energy and motivation, I do something off my list. As for repair people or other services we schedule, the people who might come and clean our homes or help us out, we have an obligation to ourselves and them to communicate clearly. I ask repair/service people to text me or call when they are almost done with the job they are on. If for some reason I’m out and can’t get back in the allotted time, I ask them to drive slow or switch my time with the next customer if possible. Being older, retired, disabled, we have to be specific as to what we want and/or expect just like anyone else. No one is reading our minds and no two of us are alike! Remind these people that it may take you a few minutes to get to the door. Our business is important to them. People who know you already will ask first, wait at the door, and not be ringing you at crazy hours – my friends and family all know that I am sometimes in bed at 7pm if I am more tired than usual. I am lucky in that my daughter moved back home with my young grandson when I got sick. There’s a double edged sword – I have the joy of involvement in my grandson’s upbringing and education, my daughter keeps an eye on me, cooks, shops, straightens up and drives when I can’t do these things for myself, but I often have to step over Legos, pick up clothes, wipe the counter. It’s a trade-off that has probably lengthened my life in some quirky way. I’m thinking that 99% of the time alone might be a bit too much and we need to seek out companionship and assistance – it doesn’t just drop from the sky. I admit to feeling panic and despair bubbling under the surface at all times – and especially fear, but I have learned to fight back and refuse to cave in. I tend to neutralize these emotions with humor – admitting the tv is loud because I hear electricity in my head or that I can’t find words I’m looking for because my brain is turning to swiss cheese). My final thought is that over the years, it is WE who have to adjust – medications vs quality of life is a big one, (pain vs clear thought and ability to engage) how we will face a challenge different than the life we expected and still be happy and/or content and somewhat productive, knowing our own limits and making them clear to our loved ones and friends and the people who provide services for us so we have a peaceful and rewarding existence. Thankyou for opening the platform.