How Inadequate Public Transportation Alienates Disabled Customers (Feat. My Photographic Story)

Public transport is used by more than 50 billion passengers each year, worldwide. It is a convenient way to get around without having to drive a car, and it’s not a surprise that it’s so popular. However, some people find it easier to use public transport than others. People who have disabilities may find it difficult to travel on public transport due to many factors, however, accessibility is definitely one of the main ones. Accessibility to public transport for disabled customers is important because many disabled people don’t drive, and therefore need public transport to get around. 

Accessibility to public transport for disabled customers is important because many disabled people don’t drive, and therefore need public transport to get around.

One reason for public transport’s importance to the disability community could be the cost of driving. Buying, using, and maintaining vehicles is very expensive (even more so if you require vehicle modifications to account for your disability), which becomes even harder once you consider the disability pay gap. In New Zealand, Stats NZ has found that disabled people earn an average of about half that an able-bodied person earns weekly. This highlights the importance of making sure public transport is an accessible resource by all. 

Throughout this article, I will include photographs from one of my university assignments. While the photographs focus on wheelchair accessibility on public transport, I will be discussing disability accessibility as a whole. I have watermarked my images just so they can’t be used elsewhere without crediting me – you can never be too careful. 

My Assignment:

Earlier this year during our Creative Communication class at University we were given the assignment of creating a photographic narrative based on the theme “I ōrea te tuātara ka patu ki waho” (A problem is solved by continuing to find solutions). I instantly knew I wanted to do something disability-related. The issue, however, is that a lot of the problems I overcome on a daily basis (such as chronic pain, fatigue, brain fog) aren’t visible, and therefore can’t be easily photographed in a narrative sequence (unless I chose to take the abstract artistic route). We were told that our images had to speak for themselves, so we couldn’t include any words with them to explain the elements and their meanings. So instead I focussed on an issue my brother faces quite often: Wheelchair accessibility on public transport.

Once I had taken the photos, I decided I would try removing all of the colour from the images except for select areas of yellow. I thought this would be a striking effect that would catch the viewer’s eye. I did choose yellow because it is a prevalent colour on and around Auckland public transport, however, the main reason I chose it is because yellow is the colour of caution. From a young age, we’re taught that yellow is a sign to stop and think. I thought this colour symbolises how whenever a disabled person uses public transport, they have to extensively think about it and plan out their journey to ensure a relatively smooth ride. 

Large gaps and steps between trains and the platforms

The first issue I addressed in my photographic story, and the first issue I’ll be addressing first in this article, is the large gaps that are sometimes present between the platform/footbath and the train/bus. The gaps between the platform and the door on trains can vary from very small to quite large, depending on the type of train you’re riding. While I’m living in the large (for New Zealand, anyway) city of Auckland, our train station doesn’t have a direct connection to the electric rail line that goes through the rest of the city. Instead, we have to catch a diesel (which is also older) train to the next town over, then disembark, then hop back on to a newer electric train for the rest of the way. 

While the newer trains have easy access points for people with disabilities, these older ones don’t. They require the passenger to take a large step to board them. Or, if you are unable to do so, they have ramps the train manager/conductor can attach to the step to assist you in boarding the train.

While the newer trains have easy access points for people with disabilities, these older ones don’t. They require the passenger to take a large step to board them. Or, if you are unable to do so, they have ramps the train manager/conductor can attach to the step to assist you in boarding the train.  

While the ramp technically fixes the accessibility issue, this can take away some independence from the lone wheelchair travellers. The ramps in the pictures below are steep enough that the wheelchair user, if they aren’t traveling with friends or family, would have to rely on the train conductor/manager to push them up and down the ramp. This may not seem like a big deal to some, but others feel very uncomfortable letting strangers, or even people they don’t know very well, push their wheelchair. The fact that public transport is also a symbol of independence to some disabled passengers also highlights this issue.

While the ramp technically fixes the accessibility issue, this can take away some independence from the lone wheelchair travellers. The ramps in the pictures below are steep enough that the wheelchair user, if they aren’t traveling with friends or family, would have to rely on the train conductor/manager to push them up and down the ramp.

This isn’t as much of an issue on buses, because the ramp is often less steep and is, therefore, more easily manoeuvrable for wheelchair users. However, if the ramp isn’t deployed, this can cause issues for disabled passengers.

Even if you aren’t in a wheelchair, large steps or gaps can cause issues. I can not tell you how many times I have rolled my ankle stepping out of a train or bus that has a large step or gap, simply because I’ve done it too many times to count. Since I am prone to ankle sprains and these injuries take forever for me to recover from, this can cause me a lot of pain and impact my mobility for days (if not weeks) to come. 

Even if you aren’t in a wheelchair, large steps or gaps can cause issues. I can not tell you how many times I have rolled my ankle stepping out of a train or bus that has a large step or gap,

Of course, this isn’t a huge issue as long as a ramp is available to bridge the gap for those who need it. However, it is an inconvenience that can be ridden of (as seen in newer model trains and busses). 

Wheelchair/disability accessible train stations (or lack thereof)

The train station in our town is only accessible by either a lot of stairs or a lift. You may be thinking: “What’s the problem? You have a lift! What more could you want?” Well, recently we have been having issues with the lift at the local train station. There are days when it doesn’t function at all. For able-bodied people, this isn’t an issue. However, if you struggle to climb steps and your only access point to the platform is not working that day, where does that leave you? 

The funny (but not really funny) thing is that before recent the station upgrade, we did have a ramp (which is always reliable) that has now been replaced with a lift (which can stop working any time). I have heard of passengers during these instances hoping of the train, finding out the lift isn’t working, catching the train back to the next station over and then taking a taxi back over to their local area, which is just ridiculous. The station the next town over is accessible by ramp, lift, and stairs. So if it can be done there, then why not here?

An even more concerning thought is: what happens during an emergency? If there's a fire on the platform or an earthquake and the lift is inoperable, how does a mobility-impaired passenger leave the station?

An even more concerning thought is: what happens during an emergency? If there’s a fire on the platform or an earthquake and the lift is inoperable, how does a mobility-impaired passenger leave the station? I’m sure in a life or death situation there would be people willing to help/carry the stranded person/people up the stairs, but why make things more difficult, when in most situations a ramp would solve this problem? Not surprisingly, stations that have lifts but not ramps aren’t just limited to my local town. I have read horror stories and pleas from people with similar concerns from all over the world. I’m hoping this specific topic becomes more talked-about so that this concern, which has such a simple solution, can be eradicated.

This isn’t only an issue for those who use wheelchairs. What if a passenger is using crutches? Sure – I myself can climb multiple flights of stairs in crutches (with a lot of effort), however, that is because I have been on and off crutches for over a decade and had a lot of practice climbing large flights of stairs in high school. I would never expect that of the average crutches user, especially if they have coordination issues such as cerebral palsy. The same goes for a walking frame user, or a walking cane or walking frame user that can’t manage stairs. What happens then? These are genuine questions I have that I don’t have the answer to, but I sure hope the railway staff do. 

And then there are the stations that are not accessible by wheelchairs or mobility-impaired passengers– at all. Mobility impaired passengers hoping to reach these destinations are often advised to hop off at the next stop and then taxi or bus back to where you’re wanting to go. Not only is this inconvenient, but it is also unfair.

Comparing the old to the new

As technology develops, our lives are slowly becoming easier. We don’t have to walk for days at a time, we can keep an entire house heated during winter, and we can cook food in just longer than an instant. It becomes obvious, regarding how traveling with a disability on public transport is becoming easier as technology develops, when you compare the old Auckland suburban trains to the new ones. While the old ones have a large step at the doors, the new ones have at least one carriage with disability accessible doors that line up directly with the platform (as pictured below). No ramp or additional assistance is required when boarding these carriages. This makes riding trains faster and more convenient for disabled passengers.

While the old ones have a large step at the doors, the new ones have at least one carriage with disability accessible doors that line up directly with the platform (as pictured below). No ramp or additional assistance is required when boarding these carriages. This makes riding trains faster and more convenient for disabled passengers.

The newer buses, though it can’t be guaranteed when you can catch them, are also an improvement to the older ones. Some busses can be lowered towards to ground with the push of a button, making boarding easier for those who struggle with steps. In my experience, the newer busses also have more room for wheelchairs and prams, which is always a good thing. 

Wheelchair friendly aisles/spaces

On the older Auckland suburban trains, there is only ¼ of each carriage dedicated to wheelchair and pram users. The rest of the train is inaccessible to those in wheelchairs. The new suburban trains, however, have a whole car dedicated to wheelchair and pram accessibility. This gives wheelchair users a lot more room to manoeuvre.

On the older Auckland suburban trains, there is only ¼ of each carriage dedicated to wheelchair and pram users. The rest of the train is inaccessible to those in wheelchairs. The new suburban trains, however, have a whole car dedicated to wheelchair and pram accessibility. This gives wheelchair users a lot more room to manoeuvre.

The space on trains, even the older suburban ones, becomes a luxury when you compare it to that of buses. In many buses that I have witnessed, there is only space for one wheelchair or pram, while you could fit at least 4 wheelchairs into one car of the older suburban trains. So if a disabled kid in a pram who can not get out of the pram is riding the bus at the same time an adult in a wheelchair wants to hop on, things can get messy. 

While these trains and buses are technically accessible, it becomes a struggle for disabled passengers to travel during busy times, especially during peak hours. Trying to manoeuvre around in a busy train carriage or bus can be overwhelming and stressful. This becomes even worse when people do not honour the “priority seating” areas, which can include specific spaces for wheelchairs and prams, and specific seats for pregnant and/or disabled and/or elderly people. There are instances when people may use the wheelchair space for their luggage, or may not vacate the priority seats when they see someone with a walking aid board the bus or train. Both of these things are inconsiderate and make traveling on public transport for disabled people that much harder.

While these trains and buses are technically accessible, it becomes a struggle for disabled passengers to travel during busy times, especially during peak hours.

Living in New Zealand, I understand that our public transport is good, accessibility wise, especially compared to that in some other countries. However, inadequate public transport accessibility is something that our community experiences from different places all over the world, and when it comes to disability rights, “good” isn’t always good enough. Access to public transport should be equitable, whether you’re able-bodied, disabled, young, old, or anything in between. 

About The Author

Amy Clements is a 20-year-old who has lived with chronic pain, the result of Fibromyalgia, since childhood. In her teens she was diagnosed with Complex Regional Pain Syndrome in her wrist, which was the result of a netball injury. Amy lives in New Zealand and studies Business part-time at University. She enjoys reading novels and writing. She especially enjoys writing about her experience with chronic illness.

Disability Resources: What do I do now?

image shows caucasian male hands using a stamp on a form

You have worked all of your natural adult life but lately it has gotten harder and harder to do those things that you have done your entire life.  Maybe you’ve had an accident, whether work-related or not. Maybe you’ve developed an illness like Fibromyalgia, Multiple Sclerosis, or even Cancer. You may find yourself seeing your physician on a monthly or even weekly basis due to your illness, and purchasing prescriptions hand over fist just to keep going.  You find yourself close to losing your job because of this. Your back is against the wall. You are having to choose between housework and your job on a daily basis. What do you do? Where can you turn?

Take a deep breath.  

You need it.  You’ve been struggling for a long time.  Take a little time for yourself to come to terms, mentally, with what is going on.  We are human and we are driven. To suddenly be forced to stop by our own body is very traumatic and there are issues that you have to deal with, whether you choose to acknowledge them or not.

Consider Intermittent FMLA.

Speak with your Doctor about a little-known part of the Family and Medical Leave Act (FMLA) called “Intermittent FMLA.”  What this allows you to do is to take a day here, a couple days there, a week there, as you need it without the penalties of a call out.  This gives you a breather. Also, if your company has a policy for Personal Time Off, you will be paid for your time off, as long as you have PTO hours available.  If you and your doctor deem that you are physically capable of continuing in your work situation, albeit at a diminished capacity, it’s a win. Hold on to it while you can.

Get your evidence together.

Get a copy of all your medical records from any physician who has any knowledge of your personal illness and has treated or investigated it in any way. You will need these. Don’t be afraid to ask your doctor’s office for them; you have a right to request your own medical records. They may charge you for copies, or charge a flat fee for the service, however they cannot deny you access.

Apply for Social Security Disability Insurance.

When you lose your job, your doctor puts you on disability, or you decide on a date to stop working due to your physical condition, go to the website for Social Security Disability Insurance (SSDI) and fill out an application.  You can do a complete application online and not have to worry about going to the local office and sitting in a long, painful, and exhausting line. The online application also has the capability to save and continue later so you can fill it out at your own pace and don’t have to do it all in one sitting which, depending on your situation and organization, could be difficult for you.

Apply for Medicaid.

You will need some type of insurance to continue seeing your physicians during the application process.  Go to the government insurance marketplace and do an application for insurance. If you have no income because you lost your job, put that you have no income.  Whatever you do, PLEASE be open and honest, as you will have to give them access to your finances and you do NOT want to be caught in a lie with Uncle Sam. This application will give you an immediate decision on whether you are eligible for Medicaid or not.  The website will also send you a confirmation through the US Mail that you have been enrolled in Medicaid. You will be able to take this confirmation to your doctor and your pharmacy for coverage. It is helpful to call the State Medicaid office to make sure your insurance covers your physician and your meds.  For example, when I went on Medicaid, I was placed in coverage by Aetna. Neither my physician nor my pain management meds were covered by Aetna. I called and was switched to another insurance provider who covered my physicians AND had better prescription coverage.

Apply for SNAP and LIHEAP.

If you have zero income, you will need assistance with food and utilities until SSDI processes. Go to the local site for Children and Family Assistance and apply for assistance for food.  It used to be called “Food Stamps” but in many places, it is now called the Supplemental Nutrition Assistance Program (SNAP). This will take care of the food. For utilities, there is a program administered by your local Community Action Association, called the Low Income Home Energy Assistance Program (LIHEAP).  Answer their questions truthfully, and complete their application process.

Time to breathe again.

Take a couple days to breathe and relax.  You are waiting on these agencies to review and process your application, and you head is probably swirling with all the paperwork you have just completed.  After a couple days, recheck the SNAP website to see if you have been set up with a phone interview. Mark the date and time on your calendar. You will need to be near your phone and able to take the call at this time.  They will probably ask you to email them a copy of your driver’s license as well as a letter from any relative or friend who has been assisting you with bills and food. Make sure the letter is signed and dated. Be prompt and make sure to follow up with your representative to make sure they receive the requested items.  There is a time limit on them receiving these items before your case goes cold and you have to restart. Then, call your local Social Security Administration office and ask for an appointment to speak with a claims representative. Mark this date and time on your calendar and be at the office at least 30 minutes to an hour early, just in case there is a problem.  Also, be sure to take all those medical records you have been compiling. That is what this appointment is for, to provide them with the evidence they need to be able to decide your case. This evidence will travel with your application to the central office for review.

Chargie Tip: Keep copies of every file, application, and document that you send, and make sure to print and keep the delivery confirmations for anything you fax!

Watch your mail and e-mail for paperwork and notices of appointments.

Within 2 to 4 weeks of applying, you should start receiving things in the mail.  Keep everything in a disability file. If any of these agencies call, answer their questions honestly and as completely as possible.  If they request documents or information, provide them as quickly as possible. SSDI may require you to see an SSDI physician to assess how your illness affects your ability to work.  It’s likely that this won’t be nearby; it may indeed be at the opposite end of the state from wherever you live. The trip will probably be excruciating for you. Be prepared. Make sure to be there at least an hour prior to your appointment to allow you find the place and get registered.  Your claims depend on it.

SSDI, once it moves to the review phase, takes between 2 and 6 months to review and send you a decision. You will probably be told that its closer to 2 months than to 6. Patience is a virtue, but I can definitely understand if you get antsy with that kind of wait.  Things like finances and tempers get stretched and strained. This is why you did the other applications, so that you can survive until the process is done. Use these resources wisely; they have to last.

From the point that all documents and evidence have been provided and all applications are under review, it’s just a matter of waiting.  Take this time to focus on you and your health. Rest, and rehabilitate yourself physically. Do the things your physicians tell you and do your best to get to feeling the best you can.  You may not be able to work any more but you must still live. As this is disability where you are not expected to return to work, ever, you are basically looking at your retirement no matter how young you are.  Start making the best of it. It may not be all that you had hoped for, but it’s what you have. Think about visiting relatives, going out to parks, and doing whatever it takes to stay active. You may be disabled, but if you sit around and ACT disabled, you will only make things worse, physically.  

About the Author

Pamela is 48 years old and has suffered from Fibromyalgia for about 5 years.  She lives in Louisiana with her three dogs. She has a vested interest in helping people in similar situations to her own, and seeks to educate people about her illness and how best to deal with it. She is planning future articles on tips and tricks for stretching your resources and tips on staying active with disabilities.

Your Career and Chronic Illness: Four Reasons Your Employer Should Keep You Post-Diagnosis

You’ve been diagnosed with a chronic illness. Maybe you’ve known for a long time or maybe you just found out. No doubt, you have a number of questions, and one of them might be What does my chronic illness mean for my career?

Fortunately, employers have increasingly become more understanding and accommodating of employees with chronic illnesses. It’s not just because they care about their employees- it’s also the law.

The Americans with Disabilities Act (ADA) of 1990 prohibits discrimination against employees and requires employers to make reasonable accommodations for anyone with qualified disabilities. If you have Crohn’s disease, this might be something as simple as easy access to a bathroom. Educate yourself about your rights and take charge of your career.

Reaching out to an employer about your chronic illness can be difficult, especially if you have a special request, but if you require accommodations then it’s important to be able to talk about it. You might even be surprised what your employer is willing to do for you, but until you ask, you might not know. You might just be more valuable than you even realized!

Four Key Reasons Why Your Employer Should Keep You Post-Diagnosis

1. You Make Them Look Good

“Wow, what a great idea!”

Hopefully, you already feel appreciated at work and can confidently state that you are a valuable asset to the team. If that’s the case, then good for you! Otherwise, you might want to think about getting a different job. If you do feel appreciated, then your boss most likely wants to keep you, and a chronic illness is something that he or she will be willing to accommodate.

It looks good for employers to hire and retain people with disabilities. Respected and admired companies typically make accommodations for such employees. The reputation of a company is very important to maintain the health of an organization. Think otherwise? Do a Google Search for the scandals at Freddie Mac, BP, or a number of other companies who suffered the consequences. News flows freely with easy access to information and scandals are that much more painful in the days of social media.

Another important point- employers like a diverse workforce. Why? It helps generate creativity and innovation. Yes, your chronic illness adds diversity to the team. Your personal experiences shape your opinions, thoughts and ideas and these are all things that add value to a team. Unique ideas are the fuel of an organization and employers are willing to pay a premium for them.

2. Replacing Employees is a Pain in the You Know What

 “I won’t be able to find anyone to replace Denise for months!”

It’s costly, time consuming and just plain inconvenient trying to find the right person to hire. If you’ve been working with the same company for a good chunk of time, then there’s a decent chance that hiring and training someone could cost more than covering your disability or sick pay!

Identifying the right person with the necessary skillset, education, background and experience can be extremely difficult, especially as the complexity of a role increases. The need to hire the right labor pool started its own industry in the form of recruiting companies.

Employers consider a number of factors before hiring someone and this isn’t limited to just education, skills and experience. Personality and fit with the organization can be just as important, if not more important than any of these three things. Finding the right fit for a role can be a difficult venture and some of the most successful organizations consider employees to be their most critical assets. Therefore, the next time you think you’re expendable- you might want to think again.

3. Keeping You Promotes Morale

“If they help Denise, then I wonder what they would be willing to do if something happened to me?”

Maybe you haven’t told your co-workers about your chronic illness, but you might want to consider it if you’ve been missing assignments. Maybe your co-workers know the entire story, or just parts of the story, but either way they know something is up.

The culture of an organization can make a business strong or weak. If employees don’t feel respected at work or fear for their jobs, then there’s a good chance that the work culture is suffering. Employees tend to feel appreciated in a supportive work environment, and accommodating employees with disabilities certainly plays into that.

4. Lawsuits and Bad PR

 “They fired Denise because of what?”

Good news for you- it’s not always that easy to fire someone. Firing someone with a chronic illness is a lawsuit and PR disaster waiting to happen. Lawsuits cost organizations huge amounts of money every year. Bad PR can be even more costly as this can have long-term consequences, including a bad reputation. Bad reputations can lead to a number of issues, including decreased sales or stock value, both necessary for business continuity and survival.

Your Career and Chronic Illness

Think holding a career with a chronic illness is impossible? Think again. There are many reasons why your employer should be willing to accommodate your chronic illness. Not only is it a legal right, but you might be more of an asset than you realized. Educate yourself about your rights and reach out to your employer if you have a request for reasonable accommodations. You might be surprised about what your company is willing to do for you.

 

Author Bio:

Angela Tipton is the founder of My Chronic Dreams, a website designed to provide tips and advice to champions of chronic illness and those daring to fight for their dreams. A champion of Crohn’s disease herself, she created the website to help others achieve their dreams of career success, health and wellness, financial success and travel.

The ‘Cost’ Of Being Disabled….

Cost of Disability

Emotional

When I became disabled nearly three years ago now, the very last thing I thought about was the cost.  I had suffered a Sciatic Nervecatastrophic, spontaneous fracture to my sacral spinal bone.  Taken alone, it was terrifying, but it left nerve damage which caused my left hip/leg to be in constant, severe pain.  I needed crutches to get around the house and a wheelchair to go anywhere else.  To me, the meaning of the word ‘cost’ at that time was the ‘cost’ of losing my independence, losing my ability to walk, and losing my hard earned career.  There was also the ‘cost’ to my partner and family of my need for continuous care due to my chronic pain. 

But there was also a financial cost that I never realized was there, but that would quickly show its face.

 

Financials:

    Income

Tight BudgetAs I mentioned, there was the loss of my income.  I was the Department Head of a six member team in a large secondary school.  My income was hard earned but very welcome.  I was soon dependant on state benefits.  That meant tightening every purse string possible.  Every treat, takeout, or trip to the cinema: everything that wasn’t absolutely essential had to go.  The knowledge that the damage was permanent meant the income adjustment was also.

 

 

   Mobility Devices

When the need came to get a wheelchair to get around I found out I wasn’t eligible for a wheelchair on the NHS (Similar to Lynley Gregory ChairMedicaid in the USA).  I would have to buy my own.  As I wasn’t able to use a manual wheelchair, bending over to touch the wheels caused me excruciating pain, I needed an electric device – scooter or a wheelchair.   Now contrary to popular opinion, these don’t come cheap and they definitely don’t come free!  But, I managed to find one that was relatively comfortable and had enough battery life to actually have a day out without becoming stranded in the car park of  a B&Q. (Trust me, I’ve been there, it’s no fun at all!)

 

Cost to me £1500…

 

Chairlift

In order to get out for the day, we had to get the wheelchair into the car.  Now, an 11 plate hatchback boot is a relatively spacious beast.  We managed to get most of the wheelchair in except for the chair pad, which had to go onto the back seat. Eventually, this became a bit of a pain, so we turned to the Motability Guys.  They sorted us out with a much more appropriate sized car. It also had the best feature ever!  A HOIST FOR THE CHAIR!  This meant that it could be lifted and placed into the boot in one piece.  To say we were thrilled is a little sad, but we were.  It was like getting all our Christmas gifts at once.

But again there was a cost!  The upfront payment was fair for what we were getting, but it still was cash that we had to scrape together.

Cost £1600…

 

 

   Accessibility

Aside from travel, We also needed to make alterations to our home.  Thankfully, the council came out to assess my needs. I garden Gregorywas granted two elevated toilet seats, four sofa risers, and a handrail.  But, I was not granted any handrails at the front door, help to alter the bathroom or the shower so I could actually bathe (as tub access is impossible), or help to build a ramp at the back entrance so I could get down the steps into my garden.  But at least what we did get was free and was delivered quickly.  And, it has all helped, so won’t grumble anymore. Honest!

 

Cost £0

But now we have to think about moving to a bungalow as I cannot climb the stairs.  The cost of that has yet to be factored in…

 

   Other hidden costs

Wardrobe

Besides the big financial costs there are other, less obvious costs to being disabled.  One of the hidden costs I have discovered is clothes. My old clothes no longer sit right on me while in the wheelchair.  My suits are too structured and are uncomfortable to sit in all day.  I’ve shelved the majority of them and have had to buy more comfortable clothes that are cut to hang well on a seated person.  Some may say that that’s just me being a woman, but it’s actually a real problem.  Jeans with stiff waistbands, long jackets, and deep v neck tops are all no-nos.  Waistbands dig in, you sit on anything long, and when you’re in a supermarket queue and the man standing next to you has a literal bird’s eye view of your cleavage-well-you rethink v necks real quick!  Even my shoes have had to change.  All my old shoes had a heel as I’m only 5″3 and a half, and they’re not massively comfy when your feet are on foot plates.  I’ve had to buy new ones.  All this may sound frivolous but hell, I’m a woman, that’s allowed……!

 

 

   Wishes

 

 

I would love it if there were more help out there.  My PIP benefit (Like SSDi in the USA) is given as a help to counteract the Security Moneyextra costs, but very often it doesn’t stretch far enough.  Council help seems to vary widely depending on where you live and benefits are constantly being reassessed it seems.  All in all, there’s a lot of extra cash that I hadn’t bargained for.  More outgoings combined with a huge drop in income equals a very stressed and anxious me.  The stress this all causes is more costly than anything I have put in to my disability  thus far and not at all helpful to trying to regain some kind of life.

 

   But there are also some silver linings to this grey day……. 

  • * We love going to the theatre and cinema and my CEA card gets my care giver/partner in for free!
  • *My Blue Badge gets me free parking and free travel over the Severn Bridge to visit my family, so that’s a definite  money saver!
  • *  my electric wheelchair enables me to beat my nieces in any race, which would never had happened before and which is a hilarious plus!

 

   Last Thoughts

So, the REAL ‘cost’ of being disabled is multi layered.  It’s costly in emotional terms, in physical terms, and most obviously in financial terms.  We all struggle to get by as best as we can, but there is a real need for more help with all of the adjustments needed after an injury/illness.  We are all one step away from being disabled.  I think we would all want to know that there is a really big bumper pad to catch us and not just a holey blanket.

 

 

Lynley GregoryLynley Gregory is an ex secondary school teacher who became disabled following a spinal fracture three years ago. She is now a wheelchair user who spends her time raising awareness of disability through her weekly blog “Topladytalks” and has written articles for Disability Horizons, Scope and The HuffPost.