[Ardean]

Hi,

I am a 42 year old woman who was in a horseback riding accident on Sept. 9th. I broke my C5, C6 and T 7/8. I am not paralyzed. As my nurse stated, "you are just another ordinary miracle." I have been home waiting for my bones to fuse with the help of cadaver discs, screws and plates.

I feel an incredible need to understand what others are going through. My best friend in grade school, 6th grade- through HS, had MS and I witnessed his obstacles, but that was 25 years ago. What has changed? What things can be done today to improve the quality of life for Quads and Paras in todays society. I believe that God provides lessons and this is mine. Please share your insights.

Thank you

[HiltonP]

In the last 25 years a lot could have been done, but in reality not much has been done. Like most things these days the cosmetics have been attended to, but little of the nitty-gritty has been addressed.

Progress has been made with regard to access to public places (shopping malls, places of business, recreational areas, tourist sites, etc). Very little has been done with regard to education, health care, public transport, and employment. Manual wheelchairs have advanced considerably, powerchairs are still in the dark ages!

The majority of permanently/seriously disabled people are still financially and socially “dependent” rather than “independent”. Much of the focus to promote a more open society for genuinely disabled people has been dissipated by the influx of “wannabe” disabled people. This has led to a growing negative view from mainstream society.

Access and acceptance varies quite dramatically from country to country, and even within a single country it varies from town to town. Not all 1st world countries provide 1st world access, indeed many of the emerging market countries provide the highest levels of access (such as Australia and New Zealand). A surprising number of 1st world countries still view disabled people as “damaged goods”, to be pitied rather than included.

My life is easier now than 25 years ago, but not exponentially so. If I look back at how much effort, time and money has been put into supposedly promoting disability awareness we have little to show for it.

[Ardean]

HiltonP, on Oct 26 2007, 10:44 AM, said:

In the last 25 years a lot could have been done, but in reality not much has been done. Like most things these days the cosmetics have been attended to, but little of the nitty-gritty has been addressed.

Progress has been made with regard to access to public places (shopping malls, places of business, recreational areas, tourist sites, etc). Very little has been done with regard to education, health care, public transport, and employment. Manual wheelchairs have advanced considerably, powerchairs are still in the dark ages!

The majority of permanently/seriously disabled people are still financially and socially “dependent” rather than “independent”. Much of the focus to promote a more open society for genuinely disabled people has been dissipated by the influx of “wannabe” disabled people. This has led to a growing negative view from mainstream society.

Access and acceptance varies quite dramatically from country to country, and even within a single country it varies from town to town. Not all 1st world countries provide 1st world access, indeed many of the emerging market countries provide the highest levels of access (such as Australia and New Zealand). A surprising number of 1st world countries still view disabled people as “damaged goods”, to be pitied rather than included.

My life is easier now than 25 years ago, but not exponentially so. If I look back at how much effort, time and money has been put into supposedly promoting disability awareness we have little to show for it.

Thank you HiltonP for your response. I work at a small private college and there has been some focus on making our campus accessible to those with disabilities, but I know there is so much more that could and should be done on this front. From an independent point of view, what is the biggest deterant? Transportation, or is it more basic, like being able to dress, etc without assistance. I know I am so ignorant of what a day in the life incorporates that I hope I do not offend anyone.
Also, your comment on "wannabes" I'm not sure I understand what you are saying. Please elaborate. Ignorance is never bliss....

[HiltonP]

The “wannabee’s” are those people with minor physical ailments (limp, short of breath, heart issues) but who are mostly overweight, lazy, or both. They take up all the disabled parking bays, and soak up a good deal of the tax rebates and concessions available to more profoundly disabled people. They create a poor image of disability, because many see them for what they are, namely “free loaders”.

[HiltonP]

I wrote this piece last year, on the 25th anniversary of the first international Year of the Disabled. It was written from a South African perspective, but holds true for the majority of countries around the world, and sadly, for most of the supposedly 1st world western countries as well . . .

"LOOKING BACK

This year marks the 25th anniversary of the first International Year of the Disabled. Much has changed in the world. In 1981 the personal computer had not yet been invented, nor obviously the Internet and eMail, neither had cellphones, you could purchase a brand new Mercedes-Benz for less than R25000, South Africa was in isolation, and apartheid was alive and well. So what has changed for the disabled community since that spark of hope was lit so long ago?

I donned my "trying to be un-biased" cap and took a hard look around me. I saw disabled parking bays at shopping malls (mostly occupied by able-bods), some wheelchair accessable toilets in malls (often used as storerooms), kerb cuts, and ramps to access some buildings, and . . . little else. There is access to some movie theatres in the cities, but not all. There is access to some sports stadiums in the cities, but not all. Banks still insist on placing all their counters at my eye level, and their ATM's out of my reach. We are largely excluded from the empowerment charters being established for business in SA. Concessions and partnership agreements do not insist on provision of access and inclusion of disabled people. Every now and then we see disabled athletes on television, but most of them can walk?!

The hard issues, such as public transport, access to schools, and employment remain closed. Most galling of all is that we have no laws insisting that new buildings are made accessable. I see so much new building development taking place, and most of it is inaccessable. It is 2006 and developers can still build inaccessable complexes.

If our State provided an accessable environment they would not need to play "nanny" to 1.3m disabled people (or at least most of them). We do not want to be "looked after", we just want to be "enabled". The State is in control of roads, transport, urban development, building regulations, public schools, etc, and yet at a recent disability conference held in Gauteng there were NO representatives from labour, education, communication and housing! These are the areas of greatest discrimination and barrier. I can enable much of my life, but I cannot enable those areas. We live in South Africa, twelve long years on from a dispensation which promised equal rights for all, yet one group of people continues to be actively discriminated against, the disabled community. South Africa may be celebrating democracy, but the disabled community has yet to celebrate its freedom. Our New South Africa has seen disabled community pushed further down the pecking order and off the budget sheets.

Our schools are still essentially out of bounds to disabled learners, our public transport system is out of reach to disabled workers, and employment opportunities are being threatened further by empowerment charters. This struck home hard last year when I reviewed a post-graduate thesis on education for disabled children. I was a disabled child, and struggled to achieve an education in a normal State school 28 years ago. It was sad to discover that NO progress had been made with regard to including disabled children into mainstream education (excluding mental, or learning disabilities) since my days in the 1970's. My old school remains inaccessable to this day, with no disabled toilets, no lift, and no ramps. The post-graduate student's conclusion was that I had actually achieved more in 1970 than would have been possible in 2000. I am still the only wheelchair student to have attended my high school in 31 years!

If one manages to hurdle the education barrier it is time to turn those years of study into a career and income. This brings two of the big hurdles into view, public transport, and building access. In the workplace I was one of 6 wheelchair users in a company of over 4500 in 1985. Then one of only 2 in a company of 950 in 1995, and finally one of 3 in a company of 4000 in 2001. Those are shocking statistics. If a disabled person cannot get an education in South Africa how can they ever secure employment, or become a contributing member of society. An inclusive society would result in disabled taxpayers, disabled consumers, disabled home owners and ratepayers, and productive disabled workers.

Where to from here? What has been done is done. However short we may have come up in 25 years we cannot change that, but we can set about ensuring that the next 25 achieve more. If we carry on at this pace in the next 25 years we will only have more ramps and parking bays and little else! The State, and private business, has had 25 years to make themselves more inclusive. Here in South Africa our constitution has, for the last 12 years, stated that they should be more inclusive. Everyone has been remarkably slow to come to our party.

How do we change this? It has to be a two pronged approach, on one hand ourselves, as private individuals and business people. On the other hand the State, and the infrastructure it controls. The most common excuse for lack of access is lack of funds, and a phasing in approach, i.e. as new developments take place, so disabled needs will be addressed. The freedom's granted to South Africans on the basis of race and gender highlight the second class nature of disability. No-one would have dreamed of "phasing in" racial freedoms after 1994. Imagine someone suggesting that women should be allowed access to management positions on a phased basis?! Yet the disabled are expected to not only swallow this, but be thankful for it!

Individually we need to assert ourselves. Do some demanding. We need to bring influence to bear on our immediate surroundings. Economic pressure needs to be exerted. Should we be doing business with companies and organisations which are not inclusive? Is your office building accessable, the shopping mall, your church, your children's school, your local town hall, the sports stadium? If not, why? Does your company employ disabled people, your school have disabled students? If not, why? I think of all the money that must have been raised during the last 25 years for disabled causes, research, etc. and I wonder if instead of giving their money, that those donors had chosen instead to make their sphere of influence an accessable one, what a different world it would be. As a disabled citizen I would be immensely satisfied and proud if someone came up to me and said "I was going to donate R1000 to a disability charity, but instead I persuaded my children's school to ramp their building and build a disabled toilet". Practical contributions will be the cornerstone of future development within our community. We need to see business being leveraged into providing access, in much the same manner as one cannot successfully conduct business in South Africa now without having BEE credentials. A good example of what could be achieved (but is not) is in our national parks. S A National Parks grants concessions to private companies to host visitors, yet their facilities remain conspicuously inaccessable. Some of these concession beneficiaries are charging over R3000 per person per night and yet they have the audacity to tell us that there are insufficient funds to provide access for disabled visitors!

We need to get local government to turn those "ideals" of disability access into laws. No building plans should be passed which do not provide full access for disabled people. No building should be allowed to be modified or refurbished without providing disabled access. There needs to be a serious drive to make public transport accessable. These local "Dial-a-Ride" gap filler programmes do not deliver. The law needs to be made to fight for our rights in the same way as it is fighting for the rights of people of colour, and gender equality. For too long now it has been easy to shrug off the needs of the disabled community as being "nice to have, but not a necessity". That needs to change.

And so, like a bank deposit which has been earning interest for 25 years, I ask myself "has my deposit gained in value?". The answer has to be "yes", but well below the inflation rate. I cannot think of a single change which has been made in the last 25 years which has enabled me to do something in 2006 which I could not have achieved in 1981. Twenty five years after the first Year of the Disabled I am still unable to catch a train, nor a bus, or a taxi. I cannot wheel into a primary, or high school. I cannot enter through the front door of the majority of public buildings in the city. The majority of local hotels and motels are in-accessable, as are the restaurants. Most damning one of all is that there is not one municipal regulation enforcing disabled access for building developments. The gains that have been made are more at a personal level rather than a community level."

[dave420atya]

well put HiltonP.

[nomis]

Good stuff HiltonP. Much appreciated info.

Through the 1970s there was an explosion worldwide of awareness for the access needs of the disability community. I got to see it in the UK, in USA, Australia and my own country (NZ) and, while it wasn't perfect everywhere, it was pretty exciting.

Access and acceptance has continued but at a slower pace and sometimes going backwards. In my own country, businesses have become much more cost efficient and that means they are more ruthless when employing. In the 70s and 80s it was the proper thing to do to employ a person with a visible disability. Now they ask can you do the job and what extra liability will you bring. It's more realistic but not always easy.

I think part of the normalisation (ghastly word) process has meant that once we're accepted we lose some of the special consideration. That can be a wake up for us not to get complacent and to keep demanding our place in society the same as others have to do for themselves.

Ardean, I reckon the best thing to do to improve your quality of life is to get involved with as many people as you can. An isolated person with a disability can quickly become a cripple whereas the support of others opens you to everything.

[john S.]

Ardean, on Oct 26 2007, 10:47 AM, said:

Hi,

I am a 42 year old woman who was in a horseback riding accident on Sept. 9th. I broke my C5, C6 and T 7/8. I am not paralyzed. As my nurse stated, "you are just another ordinary miracle." I have been home waiting for my bones to fuse with the help of cadaver discs, screws and plates.

I feel an incredible need to understand what others are going through. My best friend in grade school, 6th grade- through HS, had MS and I witnessed his obstacles, but that was 25 years ago. What has changed? What things can be done today to improve the quality of life for Quads and Paras in todays society. I believe that God provides lessons and this is mine. Please share your insights.

Thank you

I can't speak for most places. in the 70's there was a big push to help us get out of nursing homes and some actual funding. I personally returned to work during the 80's and 90's. The ADA was a climax to helping handicapped people. Once politicians found out it looked bad when they parked in handicapped spaces they went back to hating us and insisting cripples abuse the system. In ohio our last governor cut taxes on the rich then announced huge cutbacks on medicaid.
Makes ya wanna go cannible and eat a wealthy repoublcan! At least, steal his car.

john

[4Wheels]

Over my 26 Lovely F#cking years as a Quad, I have seen hardly nothing from the government.... Ha why would I expect anything else.....

I see a lot of new developments in the private sector.... (Stem Cells, Microprocessor implants, Saw Ches walking on some device... Nano technology.... Finally some of the DUMB ASS Wheelchair Designers have added Shock Absorbers....... Whoopty F#cking Doo! They had shocks on Stage coaches.........)

My state (IL) sends prople to your house (DORS) to try to get you back to work, so they can cut off your Disability........ Horseshit.........

We need better medical care, for 20 years my wife lifted me n and out of bed........ (I told Medicare and my work insurance that I needed an overhead Lift) Oh! That's a convenience..... BULLSHIT.....
Hoyer lifts are crap.......... I told them she was ruining her knees, They didn't give a Shit....
She finally had to have both kneecaps replaced, and the only time I get out of bed is when my son comes out to help!

Boy I could use some of that 9 BILLION George Bush misplaced in IRAQ!

Enuff Ranting, Someday someone will figure out a cure.... or Transplant our brains into a Bionic Body...... My Old Lady would like that......

Jim

[HiltonP]

nomis, on Oct 29 2007, 10:46 PM, said:

. . . Through the 1970s there was an explosion worldwide of awareness for the access needs of the disability community . . . it was pretty exciting.

Access and acceptance has continued but at a slower pace and sometimes going backwards. Now they ask can you do the job and what extra liability will you bring. It's more realistic but not always easy . . . I think part of the normalisation (ghastly word) process has meant that once we're accepted we lose some of the special consideration. That can be a wake up for us not to get complacent and to keep demanding our place in society the same as others have to do for themselves . . .

nomis . . . Agree with your sentiments entirely.

I’ve never been one to favour State support or handouts, I just feel it creates more “dependence” than “independence”. Where I do believe the State should play its role is in clearing obstacles out of our road of life. If our broader environment (work, recreational, sport, education) is open to all, with no barriers, then we can compete, work, play alongside our able-bodied colleagues on an equal basis. It is this mindset (i.e. one of enabling) which I think has been missed out on during the past 25 years.

It’s interesting that you mention the “excitement” of the 70’s and 80’s. I guess in hindsight they were, although at the time they were pretty frustrating. I can recall in the 70’s my face appearing across the front page of our national newspaper because I was refused entry into the Newlands Rugby Stadium (I was deemed to be a fire hazard in my wheelchair). Things have changed, and now Newlands has a permanent suite for disabled visitors. But at the same time things have not changed, because I could never get a job at Newlands, or work as a match commentator, because the rest of the stadium is completely in-accessable.

[Ardean]

Thanks for the discussion. This has been so eye opening. You know those commercials about truth regarding smoking....I think it's time for society to see the truth about the inaccessability to life for those that are truly disabled. A picture is worth a thousand words...

[john S.]

Ardean, on Oct 26 2007, 03:19 PM, said:

HiltonP, on Oct 26 2007, 10:44 AM, said:

In the last 25 years a lot could have been done, but in reality not much has been done. Like most things these days the cosmetics have been attended to, but little of the nitty-gritty has been addressed.

Progress has been made with regard to access to public places (shopping malls, places of business, recreational areas, tourist sites, etc). Very little has been done with regard to education, health care, public transport, and employment. Manual wheelchairs have advanced considerably, powerchairs are still in the dark ages!

The majority of permanently/seriously disabled people are still financially and socially “dependent” rather than “independent”. Much of the focus to promote a more open society for genuinely disabled people has been dissipated by the influx of “wannabe” disabled people. This has led to a growing negative view from mainstream society.

Access and acceptance varies quite dramatically from country to country, and even within a single country it varies from town to town. Not all 1st world countries provide 1st world access, indeed many of the emerging market countries provide the highest levels of access (such as Australia and New Zealand). A surprising number of 1st world countries still view disabled people as “damaged goods”, to be pitied rather than included.

My life is easier now than 25 years ago, but not exponentially so. If I look back at how much effort, time and money has been put into supposedly promoting disability awareness we have little to show for it.

Thank you HiltonP for your response. I work at a small private college and there has been some focus on making our campus accessible to those with disabilities, but I know there is so much more that could and should be done on this front. From an independent point of view, what is the biggest deterant? Transportation, or is it more basic, like being able to dress, etc without assistance. I know I am so ignorant of what a day in the life incorporates that I hope I do not offend anyone.
Also, your comment on "wannabes" I'm not sure I understand what you are saying. Please elaborate. Ignorance is never bliss....

LITTLE TO SHOW FOR IT! Are you kidding? We got parking spaces that are so good that people buy and sell those little blue stickers and mirror hangers like a commodity. Im ready to pay a tax on it if I could drive! I can't even get on a regular buss that runs on scheduals. I have to call 24hours ahead of time so some crackhead can come make sure I'm leaving my apartment empty while getting a 20 minute ride to the store and praying the morons pick me up and take me back to my broken in appartment that day. If I'm lucky I'll have a snack for the cops to munch on while tellimng me they will never find my stuff.
being crippled has only improved for the wealthy cripples. If your poor then it has only improved cosmetically. I have an aid that cleans some rich lady's museum 4 hours a week because the lady is blind...THE WOMAN DRIVES A CAR!
But it would be wrong to say things like "rich people abuse medicaid/medicare!"

john

[rjourney]

the problems that we have faced in just the last few months since my friends accident have been insane! honestly just being at the mercy of the government, and giant corps as well as the pharmacy. the health care system is awful.

the question is what do we do about it? how do we create the change we want to see. Be the change, i know ... but that's like a full time job! we are "regular" people with jobs and familys and a zillion other things to do. so when we are waiting a full month for a shower chair, being promised it'll be there by friday, friday comes, goes...no shower chair. call again...and so on, it's one little thing and we have to fight for it. we can't even rent one until he gets his b/c it illegal!

it's shameful that people are treated this way. and how, and to whom do we go to, to makes things better? our questions are always deflected to someone, something else that is standing in the way of things being done in a timely fashion. the shower chair is just one very small example of the struggles currently...

we are still new and learning but it's so frustrating! why does it have to be so hard?

[john S.]

Ardean, on Oct 26 2007, 09:47 AM, said:

Hi,

I am a 42 year old woman who was in a horseback riding accident on Sept. 9th. I broke my C5, C6 and T 7/8. I am not paralyzed. As my nurse stated, "you are just another ordinary miracle." I have been home waiting for my bones to fuse with the help of cadaver discs, screws and plates.

I feel an incredible need to understand what others are going through. My best friend in grade school, 6th grade- through HS, had MS and I witnessed his obstacles, but that was 25 years ago. What has changed? What things can be done today to improve the quality of life for Quads and Paras in todays society. I believe that God provides lessons and this is mine. Please share your insights.

Thank you

I've been a quad for 32 years. You are lucky. Things haven't changed much. People think we are in power wheelchairs because we are lazy. When they say we can'thave the job that we apply for they have to lie creatively. They can't just laugh and say next unless they want a lawsuit. We still don't get the job. If you got a huge insurance settlement then your usually worried about electing republicans. If you are poor, living in section 8 housing. you want a democrat to win the election. (being a republican and a cripple is like a black person joining the KKK.)
I only began getting SSI in 1999. Now I get waiver, too. I worked to pay aids for 17 of the first 24 years of cripplehood. I had 1 job for most of those years and lived off my inheretance from my grandmother for the 1st 9 years. I made 22g last 24 years so I did my best. I do beg when the weather is nice. Sometimes, republicans use me as an example of what is wrong with the community. I do have a much nicer power wheelchair today that the state bought for me. I've been robbed 3 times since moving to this part of town. I don't like them taking my stuff but I hate them tossing me on the ground and taking my chair. After 32 years I find my body deforming and I look soo ugly. It is so pathetic to suddenly see myself in a mirror. I look like steven hawking without the brains.
I can talk but often I do not.
When your back in the world of AB's you might try explaining to some people that everyone on SS or food stamps is not a druggie or a leech. Some of us deal with lives that the rest of you would give up your God's to avoid. I personally think Jobb had an easy life. I've never seen a poor paralyzed person get better.
By the way. Ask about your pituitary gland and hypothalmus. You may be able to walk but be very careful. you may be very hard to heal. I tend to grow bone where I don't need it. This creates bone spurs that are incredibly painful. Ask what the longterm outlook for neuropathy is? I'm starting to loose blood circulation to hands and feet. Incredibly painful! I use synthetic morphine and codeine...alot. The pain I feel is lightyears from what you feel. My system takes the pain as long as it can then it trips something and Sets off autonomic dysreflexia. Ask about that too?
I wish you a great life and a wonderful new year.

john

[nomis]

John S, that's a very strong, clearly stated case for a significant underprivileged underclass.
I'm a bit lost for words as what to say but I am impressed with your summary.
I'd like to see you reaching a wider audience.

[kewlcatkez]

john S., on Jan 2 2008, 09:16 PM, said:

Ardean, on Oct 26 2007, 09:47 AM, said:

Hi,

I am a 42 year old woman who was in a horseback riding accident on Sept. 9th. I broke my C5, C6 and T 7/8. I am not paralyzed. As my nurse stated, "you are just another ordinary miracle." I have been home waiting for my bones to fuse with the help of cadaver discs, screws and plates.

I feel an incredible need to understand what others are going through. My best friend in grade school, 6th grade- through HS, had MS and I witnessed his obstacles, but that was 25 years ago. What has changed? What things can be done today to improve the quality of life for Quads and Paras in todays society. I believe that God provides lessons and this is mine. Please share your insights.

Thank you

I've been a quad for 32 years. You are lucky. Things haven't changed much. People think we are in power wheelchairs because we are lazy. When they say we can'thave the job that we apply for they have to lie creatively. They can't just laugh and say next unless they want a lawsuit. We still don't get the job. If you got a huge insurance settlement then your usually worried about electing republicans. If you are poor, living in section 8 housing. you want a democrat to win the election. (being a republican and a cripple is like a black person joining the KKK.)
I only began getting SSI in 1999. Now I get waiver, too. I worked to pay aids for 17 of the first 24 years of cripplehood. I had 1 job for most of those years and lived off my inheretance from my grandmother for the 1st 9 years. I made 22g last 24 years so I did my best. I do beg when the weather is nice. Sometimes, republicans use me as an example of what is wrong with the community. I do have a much nicer power wheelchair today that the state bought for me. I've been robbed 3 times since moving to this part of town. I don't like them taking my stuff but I hate them tossing me on the ground and taking my chair. After 32 years I find my body deforming and I look soo ugly. It is so pathetic to suddenly see myself in a mirror. I look like steven hawking without the brains.
I can talk but often I do not.
When your back in the world of AB's you might try explaining to some people that everyone on SS or food stamps is not a druggie or a leech. Some of us deal with lives that the rest of you would give up your God's to avoid. I personally think Jobb had an easy life. I've never seen a poor paralyzed person get better.
By the way. Ask about your pituitary gland and hypothalmus. You may be able to walk but be very careful. you may be very hard to heal. I tend to grow bone where I don't need it. This creates bone spurs that are incredibly painful. Ask what the longterm outlook for neuropathy is? I'm starting to loose blood circulation to hands and feet. Incredibly painful! I use synthetic morphine and codeine...alot. The pain I feel is lightyears from what you feel. My system takes the pain as long as it can then it trips something and Sets off autonomic dysreflexia. Ask about that too?
I wish you a great life and a wonderful new year.

john

Hi JohnS,

I have to say that I was laughing at some of this, not b/c I found it humourous, but b/c there is so much truth in the situations and circumstances you portray.

not to forget the Thyroid! Mine buggered at 26! Fortunately I eat so little it hasn't had an impact on increasing my weight. I say this not b.c I dislike the overweight, but as I can not imagine having to deal with the increase dislocations ( is that possible I have so many now?) that extra poundage would bring. Plus then I would seem that I was in my chair due to not wanting to walk. Yes, people do think that way.

You have a unique way of looking at the world.

Take care,

K

[Ardean]

John,

Thanks for your honesty and suggestions. I am actually leaving for Mayo Clinic in MN this afternonn after months of chronic infections in my throat that was finally diagnosed as a diverticulum in my esaphogus caused by my hardware. The pain has been excruciating and it's right over my thyroid...

I'll check in when I get back to share what they say. I'm from a small town and the local doctors don't have a clue..a pill and a bill are all they know.
Jeri

john S., on Jan 2 2008, 04:16 PM, said:

Ardean, on Oct 26 2007, 09:47 AM, said:

Hi,

I am a 42 year old woman who was in a horseback riding accident on Sept. 9th. I broke my C5, C6 and T 7/8. I am not paralyzed. As my nurse stated, "you are just another ordinary miracle." I have been home waiting for my bones to fuse with the help of cadaver discs, screws and plates.

I feel an incredible need to understand what others are going through. My best friend in grade school, 6th grade- through HS, had MS and I witnessed his obstacles, but that was 25 years ago. What has changed? What things can be done today to improve the quality of life for Quads and Paras in todays society. I believe that God provides lessons and this is mine. Please share your insights.

Thank you

I've been a quad for 32 years. You are lucky. Things haven't changed much. People think we are in power wheelchairs because we are lazy. When they say we can'thave the job that we apply for they have to lie creatively. They can't just laugh and say next unless they want a lawsuit. We still don't get the job. If you got a huge insurance settlement then your usually worried about electing republicans. If you are poor, living in section 8 housing. you want a democrat to win the election. (being a republican and a cripple is like a black person joining the KKK.)
I only began getting SSI in 1999. Now I get waiver, too. I worked to pay aids for 17 of the first 24 years of cripplehood. I had 1 job for most of those years and lived off my inheretance from my grandmother for the 1st 9 years. I made 22g last 24 years so I did my best. I do beg when the weather is nice. Sometimes, republicans use me as an example of what is wrong with the community. I do have a much nicer power wheelchair today that the state bought for me. I've been robbed 3 times since moving to this part of town. I don't like them taking my stuff but I hate them tossing me on the ground and taking my chair. After 32 years I find my body deforming and I look soo ugly. It is so pathetic to suddenly see myself in a mirror. I look like steven hawking without the brains.
I can talk but often I do not.
When your back in the world of AB's you might try explaining to some people that everyone on SS or food stamps is not a druggie or a leech. Some of us deal with lives that the rest of you would give up your God's to avoid. I personally think Jobb had an easy life. I've never seen a poor paralyzed person get better.
By the way. Ask about your pituitary gland and hypothalmus. You may be able to walk but be very careful. you may be very hard to heal. I tend to grow bone where I don't need it. This creates bone spurs that are incredibly painful. Ask what the longterm outlook for neuropathy is? I'm starting to loose blood circulation to hands and feet. Incredibly painful! I use synthetic morphine and codeine...alot. The pain I feel is lightyears from what you feel. My system takes the pain as long as it can then it trips something and Sets off autonomic dysreflexia. Ask about that too?
I wish you a great life and a wonderful new year.

john

[Ardean]

Back from Mayo Clinic...very insightful. The ENT there told me I do not have a diverticulum....the back of my esophagus has fused to my hardware and if any says they can fix it with surgery...I should run! Neurology told me that the severe pain is actually migraines from my C5 injury and put me on Neuronton to help heal the nerve damage. Other than that- they want me to follow up at the headache clinic in three months to see if they have lessened. They want me to wait to see if my thyroid will straighten out of its own.

that's it-