There are some things that you loose if you become disabled or chronically ill. They aren’t necessarily related to your impairment or illness.
It’s important to realise that every disabled person experiences these to some extent. With the correct support the impact of these losses can be reduced.
Control
You may expect to loose some of control of your body when becoming disabled or chronically ill. What will be more of a surprise is that you loose control of most parts of your life. The lack of control can be the worst and most limiting loss.
As soon as you become disabled other (non-disabled) people will start to take control of you life. They will try to control all aspects of your life whether related to your condition or not.
You will probably need to rely more on help from other people. They will have their own ideas on what should be done, when it is done and how. You will also start have people ‘helping without your consent’ for examples see the Just ask don’t grab campaign.
Welfare payments
Welfare payments are likely to become very important. This means you will have less control of your finances. These payments have their own restrictions and will impact on your health. The restrictions may include not being able to save money or spend on large items. In recent years this has become even more of an issue in the UK with welfare changes.
For example while I was unemployed I needed a new wheelchair. I therefore tried to save up the £2500 I needed . This meant I had my welfare payments cut as I had too much money in savings. I also had to prove I needed the wheelchair as I had made a large payment to a wheelchair supplier.
While not initially obvious the welfare system will control more than your finances. Much of the support you can get will be linked to just a few welfare payments. Therefore you will loose more than the money if you don’t qualify.
Choice
Obviously the lack of control will limit your choices. As you will see later there are other things like lack of energy and available free time that limit your options even further.
You will have a lot of choices limited when disabled including.
- Where you go
- What you do
- When things are done
- Work
- Transport
Like everything in this article your impairment may directly limited your choices. However society normally limits on your choices far more (see the social model of disability). This lack of choice limits what you can do and your spontaneity. You may have to plan everything in advance or just stick with the same rigid routine.
Your choice of work will be limited by access, energy levels, physical and mental abilities. The most serious limit on the work you can do is what employers believe.
As a wheelchair user I’m limited where I can go and what I do. Anywhere I go needs to be wheelchair accessible and have an accessible toilet. This substantially reduces the choice of places I can go. To demonstrate the lack of choice, there are 39 National trust properties in Sussex. Only 12 of them have disabled access. I can also be limited when I can go as I may need assistance.
There are serious problems with the accessibility of public transport. They include lack of physical access, requiring assistance and abuse from other passengers. Therefore I consider trains and buses almost completely unusable.
Friends
As a disabled person you will loose friends. This often happens when you need them the most. You will probably never know the real reason why. I have seen this happen many times to different people including me.
You will also find it more difficult to make new friends. This can be a direct result of your impairment. More often it’s the lack of opportunity to meet new people or their prejudice. If you’re lucky you may make new better friends that will support you.
Unfortunately you may get people that suddenly pretend to be friends. These people see your impairment as an opportunity to manipulate you.
The one positive is that any friends that stay with you are likely to be good friends.
Respect
Disabled people get a lot less respect and are often ignored. I have lost count of the number of times I’ve had people ignore me, talk over me, push past me or threaten me. One of the more common (and sometimes comical) examples is people asking a near by non-disabled person questions about the disabled person. The most extreme version I’ve experienced is someone asking my assistance dog questions about me.
An extreme result of the lack of respect is the increasing incidence of disability hate crime. A Scope study found that approximately 2 in 3 disabled people received abuse. This has been increasing especially in the past 10 years. The last survey I did in 2016 showed that over 90% of disabled people in Brighton had experienced abuse in previous year.
Money
Living costs more as a disabled person. These extra costs can arise from requiring specialist equipment, more expensive housing or transport. They can even be simple things like not being able to purchase items online or requiring warmer housing. To offset some of these extra costs there are welfare payments (DLA and its replacement PIP).
It is estimated that being disabled costs on average £550 extra a month. The situation is so bad that an Extra Costs Commission investigation was conducted into how the costs can be reduced.
As an example I use a wheelchair that retails for over £2,000. It is supposed to last 5 years and it requires about £100 of servicing parts every year. This is before any other additional costs are considered.
Disability pay gap
The disability pay gap compounds the money problems. It means that for a similar job disabled people are paid up to a third less. Non disabled people also get promoted quicker. While this illegal under the 2010 Equality Act it is common place.
When I was a full time employment I had the job of software developer and helped manage the projects. However I was only had the title of junior software developer. I remained a ‘junior’ developer for over 6 years. That is 3 years more than all the other junior developers including the ones I had trained. I was also being paid a third less than the other junior developers, including those I trained.
Energy
As a disabled or chronically ill person you will find that you have less energy than a non disable person. Some chronic illnesses will directly impact how much energy you will have.
Normally the lack of energy is a side effect of your impairment. For example someone walking badly or with a stick needs 1.5 times the energy to walk. Manual wheelchair users typically require over twice the amount of energy to get around. Obviously if you need more energy to do everyday tasks you will have less spare energy.
The lack of energy is very hard to get used to when disabled. Especially when your energy levels may vary from day to day without warning. It is described well by the disability metaphor known as spoon theory.
Usable Free Time
Disabled people tend to have less usable free time than a non disable person would have. This may sound wrong to some people. However it normally takes disabled people longer to do every day tasks or they spend time waiting for assistance.
To get out of bed in the morning a non-disabled person can just take the covers off and get out of bed in seconds. For a disabled person this can take many minutes of effort or they can be left waiting for their allotted care time slot.
Another common example is traveling to places. A 20 minute car journey for someone non disabled could take over 30 minutes for a disabled person when you include finding an accessible parking space and getting a mobility aid out of the car. Things can be even worse on public transport. Often public transport journeys will take a lot longer than for a non disabled person and require booking days in advance.
I’m watching my train leave in 5 mins and I’m not on it because I apparently didn’t arrive early enough for staff to get the ramp.
— Katie Pennick👩🏼🦽 (@KatiePennick) January 22, 2020
I’m late because the bus I was on let everyone (20+ people -full bus) off before deploying the ramp for me.
Everyone on that bus made their train. pic.twitter.com/BVsSGI4qrR
To make matters worse the extra energy required means that a disabled person will typically need more rest and recovery time.
Confidence /Self Esteem
After reading the rest of this article it won’t be a surprise that disabled people tend to loose confidence. Abuse, lack of control and exhaustion all have an impact on a persons confidence.
In the UK the introduction of Work Capability assessments and Personal Independence Payments assessments in the last 15 years this has made the situation worse.