'I've been living in a wheelchair for months. The hardest part is feeling forgotten.'

Dear business owner,

I am writing to you to enlighten you about how your business makes me feel. Let me explain first who I am, so you can get the full picture.

I'm a mother, a wife, a friend, a daughter. I am also someone who has had Stage 4 Cancer for over four years, and this year I was diagnosed with Motor Neurone Disease. 

I also have a large circle of friends and family who like to eat out and enjoy life together. We are busy "making memories" - and would like to do so in your establishment - but since becoming wheelchair-bound this year, things have sadly changed. 

Listen to The Quicky's episode on the reality of life with a disability in Australia. Post continues after audio.

Simply getting a cuppa with a girlfriend is now a big undertaking.

I'm not even going to get into the logistics of what it takes to get dressed, in the car, find a park, get back into my wheelchair and even make it into your fine establishment, because frankly it's a big task and I'm often exhausted before I've even had my first sip of your thoughtfully brewed coffee.  

Understand, I've made a big commitment to spend money at your business, and because of my experiences I've learnt that my preparation needs to start long before I even pick out my outfit. 

In fact, I now start my preparation weeks before I commit to trying your venue.

These preparations include phoning you and your staff and asking you the following questions:

1. Do you have wheelchair access?

2. Do you have a disabled toilet?

Fairly basic questions, I would have thought - especially in this day and age where being inclusive is something we are all aware of and embrace. 

Here are some of the answers I've received:

1. "Yes, we have a ramp out the back, but sorry no disabled toilet or parking space." 

2. "No, we don't have a ramp, but you can dine outside on the footpath. But yes, we do have a larger toilet than normal that I'm sure you could use."

Try to do the brain gymnastics with those answers.

Heads up: Answers like this usually stop me from wasting my time trying your establishment. 

Now from some of you, I do get the all important 'green light' - a "YES" to both questions! 

Brilliant - I'm booking a table.

However, I've sadly learnt through some pretty horrific instances that my two questions are clearly not enough to ensure I have a safe, clean and comfortable experience at your business. 

My most recent experience in a disabled toilet was at a restaurant. I'd rung ahead as usual to ensure the place where I was taking seven other people would also suit my special needs. The friendly staff member assured me they had a suitable inside table for us, and a disabled toilet within easy reach to use after our meal. On arriving I double checked that the disabled toilet was still available and was assured it was, I just needed to ask for the key. 

After enjoying a lovely meal and drinks, it was time for me to ask for the key. Our first clue that things weren't up to scratch was that we couldn't even get into the toilet without our waitress needing to move an outside heater and dozens of pairs of staff shoes that littered the entryway. 

Once inside, we were greeted with a drinks storage room that doubled as a staff smoko room - with a toilet in it. 

With so much real estate given over to storage, I could hardly fit my wheelchair inside and my hubby had to help me stand to even get close to the toilet seat. 

Inside the toilet itself were hundreds of cigarette butts, ash and a very dirty toilet bowl. There was no toilet paper, no soap to wash my hands afterwards, and drying my hands meant rubbing them on my clothes.

I was horrified that after so much communication with the restaurant's staff about my needs; no-one had even checked the state of the toilet before directing me in there.  

I felt so let down, like my needs weren't important. I felt dirty and couldn't wait to go home and shower. It ruined my lunch and my time with my loved ones.

If only you'd put as much thought into this as you do into your cup of ethically sourced, rainforest-grown, dried by the winds, blown by the flapping wings of the rare yellow-beaked-something-or-other-bird-that-is-nearly extinct coffee you're so proud of. 

Sure it's nice, but I'll need to pee after I've had one.

Watch How to interact with people with disabilities. Post continues after video. 

I'm often asked if I complain. The reasons why I don't are varied, but here's some of them:

• I'm so embarrassed.

• I truly feel that you don't care.

• I don't have the energy to cause a scene.

• I don't want to ruin it for others who I'm dining with.

• I don't have the energy because I'm dealing with cancer and MND.

• I don't have the energy, I've just used your disabled toilet!

• I don't have the energy.

Going to the toilet is a basic human need. After what I've seen, I feel I need to point out the obvious to some business owners: 

• Disabled toilets need room and should never be regarded as a great place to store food and drinks. This is wrong on so many levels.

• People in wheelchairs can't use a normal cubicle. 

• They also can't walk up stairs to get to a disabled toilet.

• People in wheelchairs have periods and need appropriate bins in the toilet.

• People in wheelchairs like to look at themselves in the mirror after washing their hands. Please place the mirror at a lower level. (Just a reminder that most of us can't stand up.)

• If you really want me to buy drinks, you'll need to provide me with an accessible toilet.

I write this letter not just for myself, but on behalf of others who might experience the same issues. Please know there are many of us and, as mentioned, we have money to spend. 

Also know that we are extremely loyal to the establishments who do provide for us. We can trust that we will have a good time with these businesses - our friends and family are happy to travel to join us at these places, knowing our comfort is taken care of. 

Know also that as a community, those of us who rely on disabled toilets talk.  

To my friends who face similar challenges as I do, I know you don't have the energy for this, so please feel free to use this letter and send it to a business that's failed to meet your needs.

Feature Image: Supplied.