I’m disabled, my life is gone—I’ve heard that so often from newly disabled people. Some become trapped in a black hole of thoughts of what used to be, anger of what was lost because of their disability, and then some give up and although they could do things for themselves they instead become overly dependent on others to do almost everything for them.  Although all of the above may be normal at first, you have to break out of the above to move forward and find you have a good future life ahead.  

When we become disabled, we can lose our jobs, our homes, our medical care and sometimes even lose our relationships and family.  Immediately contact your city/town’s Community Services Department to see what services, referrals, and help can be provided to help you through—ask for food, welfare and medical if you need it, help in applying for Social Security Disability (and remember that the State Area Agency on Aging will also help you apply for SSD at no charge and without any age limit) and don’t forget to ask for some therapy too.  

I think one of the best moves is if the disabled person gets into therapy to help them adjust to all that has happened.  You are no less a being than any one else.  There may be some difficulty with speech, there may be difficulty walking or a mobility device may be used, there may be difficulty with vision, there may be some difficulty with arms and touching, there may be chronic pain, there may be depression, and many other disabilities, but you are still the person inside that you were before, and you may have to learn adjustments to walk or use equipment, or even work on specialized therapy to fight depression, anxiety and agoraphobia, etc. in order to get out in the world again.  BUT DON’T GIVE UP.

Anger is a step that some go through when the dust of disability finally settles, their job is gone, it all causes great pain, and anger sets in.  Anger comes in various ways, and sometimes in angry outbursts directed at immediate family.  The anger is at the disability, the loss of their job and the helplessness they now feel, but the anger and/or violence hurts the immediate family.  Sometimes it breaks up the family, and forces spouses and kids to leave.  This is why I suggest getting into therapy upon disability to learn that you can make it through no matter what and avoid the knee-jerk reaction of anger.

Sometimes living alone has its advantages because if you don’t get do it yourself, it doesn’t get done.  That means if you don’t get out and food shop, you have no food—it forces you to get out in the world and learn how to shop as a disabled person.  Sure you can find a supermarket and order from them, but you pay extra and you risk dented food cans, old fruit and old meat that don’t meet your standards, and they are not looking at expiration dates when they pack your order on dairy or anything else. 

One of the pitfalls of having someone else do everything for you is that you can become too comfortable with that and let them always do it, and you never get out and try it.  As a disabled person, please always do your best to join that other person in doing errands because it helps you as a disabled person to maneuver among people and learn to shop to prepare to take care of yourself.  Shopping with an electric scooter and dragging a shopping cart behind you takes real practice turning between aisles, but eventually you can do it to shop for food and in other stores.  In some stores, you can ask for a clerk to help you shop, but you may want to call ahead first.  Always remember that in the future, that other person that helps you could have a serious illness and be down ill for a few months, they could go visit a relative for a few weeks, or they could leave you permanently, and you would be left vulnerable and alone to try to learn to take care of yourself.  So it’s absolutely necessary to never leave yourself vulnerable, especially when you could have learned to take care of yourself all along.  Plus, the person you accompany when shopping would probably enjoy the company and it would make them so happy to see you getting out and trying your best. 

To help yourself along, what are you doing for yourself to put a little smile on your face?  Do you hate that wheelchair, scooter or power chair you have to use??  Well, Walmart and some other stores have auto sections that have great stickers that are colorful flames and characters that you can put on your chariot---YES, YOU CAN PUT THEM ON YOUR CHARIOTS.   I am the only person in our area to have anything on my scooter and I have flames down the side and IT’S FUN!!  You can even go to Pep Boys or other auto places and get all types, styles and colors of the detail tape and get someone to help you “detail” your chariot.  The only limit is your imagination, your arm reach to do it, and the help you can get if you want to really do a “detail” job.  Let your inner you come out and stop hating your chariot.

Do you hate that cane you’re using?  Well, they have come out with some fantastic and unusual canes that you may find a cane that would make you feel much chipper.  A person in the disabled group I attend exchanged her cane for a “walking stick” which is taller and she likes it much better.  It is more detailed and more interesting to look at and for her it is better to use.  I am seeing canes that are Lucite and with every design imaginable in them.  Plus there are various wood canes with all types of heads, including animal heads.  So don’t give up.  I have a cane too and I painted mine.  I may be disabled, but I don’t have to have dull and drab looking disabled equipment.

Last but not least, as much as you may think you are okay, please try to find a local disabled group that meets and go to the meetings.  It gets you out among other disabled people, there are field trips, it lets you know what is happening in your community and you may learn the city is meeting to cut disabled transportation, you learn the latest medical information and devices coming out (and what you learn that day, the next week you could be diagnosed with), you learn places to get resources for grants, services, help with landlords, ADA problems and much more, you can gauge your independence as you listen to others speak (am I being too dependent on others at home or am I being too independent and I should be calling resources for help) and most of all the group is about being keeping our independence. 

Love, Suz, Leader of the Permanently Disabled Butterflies