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Disability 101: I Have A Voice

By Sandy Lahmann
Daily Summit County, Colorado

I’ve been racking my braintrying to figure out how to explain this to you. I guess it’s about a dumbing down, a denial of respect, a denial of dignity, a loss of voice.

I have a voice. I have a well thought out opinion. I have valuable knowledge. I am capable of making sound decisions.

But some people apparently think I don’t and I’m not. Just because I use a wheelchair. There’s a stereotype, an assumption, that people who use a wheelchair, people who are blind, people who are deaf, and other people with disabilities are not very intelligent.

As a result, some service providers, family members, co-workers, and community members feel compelled to tell us what to do. They feel a need to instruct us, guide us, inform us, explain to us, decide for us, and lecture us about how we should live our lives. And then they want to speak for us.

In other words, they treat us like children who must be protected for their own good. How terribly patronizing. It curls my toes. It sets me to screaming in frustration.

I am 46 years old. I have a college degree with a 4.0 GPA. I am a successful professional. I raised two children into two awesome and successful adults. I am not a child. Despite the fact I use a wheelchair.

I don’t need you to tell me how to manage my disability, what health care to pursue, what prescription drugs I should be taking, what supplements I should be taking, what food I should be eating, what exercise I should engage in, what extracurricular activities I should be participating in, where I should be living, whether or not I should be applying for social security benefits, what I should think, what I should believe, what I should do, and how I should breathe.

I really can figure these things out for myself. I am capable of doing my own research. And I have. I am capable of seeking out and evaluating the opinions of professionals. And I have. I am capable of weighing all the evidence and deciding for myself. And I have.

Why is it some people without a disability automatically think they know better than a person with a disability about how to live with a disability? It just doesn’t make sense.

Then some people without a disability want to speak to other people without a disability about what it’s like for people with a disability. How about if people with disabilities speak about what it’s like for people with disabilities?

I have a voice.

TASH, a civil rights organization for people with disabilities (www.tash.org) shares the following verse:

“You do not know what I see, what I believe, what I dream, what I know. You do not live my life! You cannot be my voice. - From the Voice of the Highly Regarded (If I ever do want you to speak for me I’ll give you a call.)”

T-shirts with the saying are available from The Nth Degree at www.thenthdegree.com<http://www.thenthdegree.com>; .

Sometimes I might have an opinion with which you might disagree. Sometimes I might make a decision with which you might disagree. Sometimes I might take a risk and do something that’s not totally safe. And that is my right.

There is dignity in formulating my own opinions. There is dignity in making my own decisions. There is dignity in taking risks. Not to mention a life well lived.

Show me respect my granting me this dignity.

Published: http://www.summitdaily.com/article/20090315/NEWS/903159975/1078&ParentProfile=1055&title=Disability%20101%20%20I%20Have%20a%20Voice

7 Comments on "Disability 101: I Have A Voice"

linda simmons on Fri, 20th Mar 2009 7:51 am

GOOD FOR YOU!!!!
I have a child in a wheelchair due to a connective tissue disease that is not curable, while vactioning in Utah we went to the movies, a lady starting chasing her trying to touch her to pray for her.It scared her to death, and what nerve,it’s OK to say something nice but dont touch you wouldnt touch a able bodied child.We laugh about it, but it just shows how people think.
Linda in Florida

cindy K on Fri, 20th Mar 2009 10:20 am

Why do so many jobs or leads give you the support that they are looking for with people with disabilitites and then they find more about you and they cancel you out without even giving a try as i had given my best to be an Intern to work with the disabled and i am one and they had turned me down. I really feel that this should change how interns are human too and not dirt under their feet as now i feel like i failed and i want to speak out as this is completely wrong and that i feel that this is just a joke to see who does get in and the ones who dont. I want to be heard as this really got me mad and that give us a chance and not say it was a hard decision as that is a bunch of lies and they could call us and work out something to help us so we dont feel this way. thanks and looking forward on hearing from anyone who has the same problem what i am going through and not give us a run around. Please lets stand up together and say we are equal too and not going to give up. Cindy in North Dakota

Rita on Sat, 21st Mar 2009 10:36 am

I agree with you on your comments.

I have had both hips replaced and my newest - the left hip replaced in 2007. My left leg is now 1″ shorter than my right which was done 3 times as I broke the bending rules and this hip came displaced 3 times. I use a cane as I limp and it is harder walking with a limp without a cane for balance.

Anyway I have been going thru this lie of a civil rights case now for close go 3 yrs. At the start of the case I had no attorney and the liars did. Indiana Civil Rights believed the rich liars with the attorney over my truths with no attorney as I am poorer and they all had money for atty. and I did not.

I have never lied to any courts for money from someone and I have never lied to any courts period!!!!!

carlie marshal on Mon, 23rd Mar 2009 8:04 am

I got cancer in 2004 I have been thru 3 yrs chemo 7 weeks of radiation all my nerves are ate up from my knees down I have neuropathy and I have to have my nails done because they are dead, I also wear orthtics in my shoes I have a mass of arthritis in the center of my spine 2 bulging disc and arthritis tramatic in my left ankle, I had a masectomy in 2005 leaving me with lmphodemia in my left arm I wear a life time compression sleeve and glove my tumor was my whole breast 3 plus I take 13 pills a day if I don’t take my foot pill I have leg tremors it take s900 millograms to keep them calm, I also had a hernia rupture and no one thinks I am disable they say I don’t qualifi I lost my job in 2006 after 11 yrs I contacted civil rights they said as long and they had white and black employees I had no rights this is bull I contacted social security thay refused me I have worked 5 jobs since then I did good work in pain my best friend in aleve I was a manager for 30 yrs now when they see my sleeve and glove I am a freak to them everyone always finds an excuse so I am stuck doing a hard job I do laundry at 7.50 an hour in a nursing home do I wear my sleeve an glove no I have to wash my hands so I am not doing my health any good I do wear it at home though I also have glaucoma and ostiprothis spelling probably not right, where is fairness I know people getting disability because they are drug addicts kick the habit dude fair it is not so why have an act?

United Church of Christ Disabilities Ministries on Tue, 24th Mar 2009 10:27 am

[...] URL to article: adawatch.org/?p=314 [...]

Cynthia Granderson on Sun, 29th Mar 2009 7:56 am

Can I have a voice??
Let me start by saying Ive been disabled for aproxamately 14 years and have recieve an SSI check on a monthly basis since then. Ive tried working and did some work as long as I could. But the real frustration began back in September. I recieved a letter from the Social Security Admin explaining I needed to call a number and talk to this agent as they believed they owed me money. I called and the agent explained that because of my work history I should have been getting a check from Social Security Disability as well from June 1996 to the present. Oh wow, it only took them 12 years to figure out thier mistake? I guess thats not unusual for them, which is pretty appalling on its own. After answering several questions and swearing my answers were honest, he told me that each month during June 1996 to Dec 2008 I should have been getting exactly $20 more a month if I didnt work in that month. Sounds good to me, not exactly the “the Trump Fortune” but my calculations were that Id get a lil over $3000 in back pay. All I had to do was wait, he said it could take up to a year to straighten it all out, lol, whats another year after 12? So I did just that, waited. And on March 4 2009, my birthday, I recieved a check for for a little over $1,500. There was no letter of explination or anything so I made my first call to my local SS office. They said they didnt know anything except that a letter of explination had been sent out a week before the check so I should have gotten it. They said not to worry and that it would come soon. Eight days later and I still hadnt recieved it so I called back and the woman in a rare moment of actually trying to be helpful the agent said she would send me a copy. I get the letter and it basically said, we decided to give you $1,500 or so cause…well cause we said so. And that was it other than the standard option to appeal the decission. Again I call them to see if they could explain how this was calculated. Was told, no, and yeah the letter is strangly lacking details, the agent assured me she would contact the one who calculated it and find out more. Surprise!! She didnt. So I decided to file an appeal. Did so and decide I should try to get the records they used to calculate it. I called SS back and was told they didnt know what records they were. So my disabled self knew what records id need to calculae it myself. I asked them for those records and was told that I should call the IRS cause they didnt have those records. HUH? Then how did they decide what to pay me? IRS said HUH? they told you to call us? We get our records from them. What is this now, lie number two at least, and not just a lil lie but a big lie. So I call back to SS and told them what IRS said, lol, the agent told me Oh yes, I dont know who told you that but it was untrue and that she would send me a form to filll out to request some of those records but they wouldnt be detailed and she hoped it would help anyway. Guess what? Never got that form. Mind you, everday Im pooring over the site SSA.gov to see what i could do, and i had to dig hard but finally found out i could get detailed records with a different form. Si I call back, ask for that form and was told ok but those records would cost me like $30 dollars for each year of records!! OMG! I didnt see being able to pay that for 12 yrs worth of records. So I hung up and just cried. It seemed like I was just going to appeal with no eveidence. Then I thought, wait…doesnt the “freedom of info act” open this stuff for me? So I read all about that only to find out it was actually the “privacy act” that would open the records for me and that i couldnt be charged but a copy fee 50 cents for each page at about 10 pages max, BUT!! if I were fileing an appeal they should be totally free. So I call back, mention the “privacy act” and explainn I now no my rights and she said of course Ill get those out today!! A week later still nothing, and their office is two miles from me. So I call back, and this is some real dishonesty, The agent asked me who said they would send them, I said her name and told him once more that it was “financial records i was waiting on. He thought he put me on hold but he didnt and I hear him ask her if she has sent me the “medical records i requested, she says wait she said “financial records” He said she told me medical, the lady said no shes mistaken, he says oh well, im going to tell her they were sent, then he laughs and ACTUALLY HANGS UP ON ME attempting to take me off of hold. Im pissed now!! I call back, he answers and I tell him he didnt have me on hold and i heard everything he said, and he told me “if you dont change your tone I will hang up on you” i SAID WHAT?? Let me speak to your superviser, and he hangs up on me. Wow. I wait a while, calm down call back, get him and ask for the superviser again, was put on hold for 18 minutes then told the superviser would call me back. Amazingly he does, and begins telling me what I wanted, and I said wait, let me tell you what I want cause you just know what he said I want and he has no clue. So he listens and im almost in a coma from shock. Then he explains yes, I could get all those records for a fee of…I said NO, and told him to read “the privacy act” and at that point he remembers yes it would be free!!, lol But admits it would take about 2 weeks to get them. I said then why did Kathy say she would send them out the same day as I spoke to her? He didnt know of couse but I know KATHY IS A BIG LIAR!! And at the rate this is going, the supervisor is more than like one as well. I then asked where I could get help with this whole appeal cause Im seeing Im not getting no where, he says he will send a list of organazations that could refer someone. And as of today I recieved from him a flyer saying i have a right to seek help, but no list. This is all just so crazy, that all these people can so lie and point me in wrong directions, hang up on me and everything thing else. Ive kept names and dates of all this and its sad. This is how they treat the people they claim to help. I had one agent actually say “trust me, its calculated correctly!! I said, call me jaded but that didnt seem like good advice coming from the vary people I trusted were paying me correctly for 12 years. Seriously, its not even about the money, its not that much anyway. Its about being treated this way. Anyone as appalled as I am??? Im tired of the governments lies and deceptions and this is one I might be able to do something about so Im going to do as MalcomX suggested, Stand for something before I fall for anything. Anyone out there have simular experiences? Any advice? Please I welocome any feedback. Id even welcome the social security administration to defend any of this but guess what? I know that will never happen. And think about how many people dont question these types of things and just except it, how much have they been cheated out of? And these people, encluding myself, are the vary people who could desperately use this money that we should have gotten all along to do things like actually pay an entire utillity bill and not just part of one, to stock up on can goods and stuff for hard times. To buy that bus pass we could never afford and get a mattress that doest have springs poking out of. Yeah, those are the things ive done so far. ONCE AGAIN, ID WELCOME ANY FEEDBACK!!

Sarah Knapp on Sun, 3rd May 2009 12:05 am

You are so right! I have multiply disabilities and feel that people who don’t have a disability ignore you and want to put you in the closet. They dont’ understand you or want to understand you. Your only judged on the type of person you are from the outside on the way you look. When I was employed I had a boss who I felt had more problems then I did. I have Epilepsy and when I had a seizure, how she and other employees didn’t know how to deal with it. I’m over fifty years old and I never let the disabilities I have get in the way of going on with my life.

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